Uninvisible with Lauren Freedman

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A podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a voice actor, writer, and activist, who lives with Hashimoto’s disease…

Lauren Freedman


    • Apr 27, 2022 LATEST EPISODE
    • monthly NEW EPISODES
    • 1h 4m AVG DURATION
    • 149 EPISODES

    5 from 94 ratings Listeners of Uninvisible with Lauren Freedman that love the show mention: invisible illness, chronic illness, advocacy, sheds, cope, lauren, medicine, wellness, wonderful podcast, much needed, health, alone, ones, informative, approach, light, voice, important, issues, interesting.



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    Latest episodes from Uninvisible with Lauren Freedman

    148: Getting Sexy with Andrew Gurza

    Play Episode Listen Later Apr 27, 2022 99:51


    Andrew Gurza is an award winning Disability Awareness Consultant and the Chief Disability Officer and Co-founder of Bump'n, a sex toy company for and by disabled people. Andrew uses they/he pronouns and identifies proudly as disabled. Their work has been featured on BBC, CBC, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the subject of an award-winning National Film Board of Canada Documentary, Picture This. Andrew has guested on a number of podcasts, including Dan Savage's Savage Love and Cameron Esposito's Queery. He has spoken all over the world on sex, disability and what it means to be a Queer Cripple. He is also the host of Disability After Dark: The Podcast Shining a Bright Light on Disability Stories, which won a Canadian Podcast Award in 2021, was a Queerty Award nominee, and was chosen as an Honoree at the 2020 Webby Awards. The show is available on all platforms. Andrew  is also the creator of the viral hashtag #DisabledPeopleAreHot. You can find out more about Andrew by going to www.andrewgurza.com and connecting via social media @andrewgurza_. Tune in as Andrew shares: how they were diagnosed with cerebral palsy (CP) at the age of one and a half their more recent diagnosis of IBS, and how it has presented its own challenges how COVID has affected their sex life, and why they hire sex workers where they can see room for disability discourse to grow how they emotionally process ableism from day-to-day the nuances of caregiving, and how bad management can lead to dehumanizing experiences for patients how care management can be improved from the top-down how they have cultivated their mindset — and how their #1 advocate, their mom, was key in encouraging them to develop a thick skin and a sense of humor a nuanced conversation about accessibility — and why it's more difficult for disabled creators to create accessible content, even if we'd like to how we can work to get out of the public health crisis of bias in healthcare: by hiring those of us who are historically excluded to positions of power, to reshape the system from the top-down why and how they were inspired to create Bump'n — the world's first disability-driven sex toy

    147: Bipolar Señorita Dailyn Santana

    Play Episode Listen Later Mar 2, 2022 60:13


    Dailyn Santana is a first-generation Cuban-American actress, keynote speaker, spoken word poet, and mental health advocate. Her work focuses on eradicating mental health stigma and her personal experience of living with bipolar 1 disorder, depression, and anxiety. Her mission is to be an example that those living with mental illness CAN live a happy, fulfilling life. She believes that living in your truth is the most powerful tool you can have, and performs her spoken word poetry at events and schools/universities across the country. Her work has been featured on or at The Dr. Oz Show, ALL DEF Poetry, Nuyorican Poets Cafe, Swaay Magazine, I and I Outfitters, We All Grow Latina, and Spiritú, and she has collaborated with Mitú, the BeVocal SpeakUp for Mental Health initiative, BeRemarkable Foundation, The Womens Empowerment Network, the American Foundation for Suicide Prevention, and the National Alliance for Mental Illness. Tune in as Dailyn shares: when she first experienced mania and psychosis — but that she lived without diagnosis for at least a decade how she was haunted by stigma and shame from the early days of her diagnosis how her diagnosis affected her relationship to her creative outlet: poetry the role her cultural background played in her relationship to her diagnosis and care why she came out of her “bipolar closet” how she interviews potential practitioners, and her tips for others looking for a new therapist why her diagnosis doesn't define her how she became a mental health advocate what a “warm line” is, and how helpful it can be (see the links in show notes for some directories!) why asking for help is a sign of strength

    146: SIBO Sisters and Hashi Posse Unite — It's Phoebe Lapine!

    Play Episode Listen Later Feb 16, 2022 57:47


    Phoebe Lapine is a food and health writer, gluten-free chef, culinary instructor, recipe developer, wellness blogger, Hashimoto's advocate and speaker, and the voice behind the award-winning blog Feed Me Phoebe. Named by Women's Health Magazine as the top nutrition read of 2017, Phoebe's debut memoir, The Wellness Project, chronicles her journey with the autoimmune disease, Hashimoto's thyroiditis. She is the host of the SIBO Made Simple podcast and author of the new book by the same name which helps those newly diagnosed or chronically fighting small intestinal bacterial overgrowth. Phoebe's work has appeared in Food & Wine, Marie Claire, SELF, Glamour, Cosmopolitan and Mind Body Green, who named her one of 100 Women to Watch in Wellness. She was born and raised in NYC — where she continues to live and eat. Tune in as Phoebe shares: how she was first diagnosed with Hashimoto's thyroiditis how her health has impacted her relationship with food how much work it takes to be well, especially when one is impacted by chronic illness what SIBO is, and how she was diagnosed how the symptoms of SIBO can manifest in the body about the state of SIBO research and clinical practice what it was like to humble herself with her own advice after writing The Wellness Project how big a role stress can play as a root cause in chronic illness about the close correlation between IBS, SIBO, and autoimmune disease what a low-FODMAP diet is all about how she accesses and optimizes her own wellness what she thinks the next frontier of gut health will be

    145: Crafted to Thrive: Mindset Business Coach & Spoonie Nikita Williams

    Play Episode Listen Later Feb 2, 2022 80:14


    Nikita Williams is a mindset business coach and the host of the podcast, She's Crafted to Thrive. She was diagnosed with endometriosis in 2009 and fibromyalgia in 2010. These diagnoses inspired her to use the training she received from previous jobs to jump-start her career as a business coach. Nikita learned that having a chronic illness did not limit her potential. In fact, it helped her to see the possibilities for herself and for her clients. Her aim is to help all creative women — especially those who live with chronic illness — to go from feeling limited to limitless so that they can create a life and business that thrives, in their unique way. Tune in as Nikita shares: that she first noticed debilitating pain on her honeymoon, but noticed irregularities in her cycle from its appearance at the age of 15 the learning curve of “not knowing what you don't know” that she's been additionally diagnosed with PCOS (polycystic ovarian syndrome), adenomyosis, IC (interstitial cystitis), and vestibulitis (which she now has as a result of medical trauma caused by a healthcare provider) why she decided to take a year off all medications that she has never been offered mental health support for her conditions how she discovered she was a highly sensitive person (HSP) why she only sees female doctors how seeing a urogynecologist was a life-changing experience for her why self-advocacy is so vitally important why finding a way to cope with her pain has always been her first priority — and yes, even before the question of her fertility that the depth of her chronic pain and surgical intervention forced her to face her mortality how essential oils and EFT (Emotional Freedom Technique) have helped her manage her pain and anxiety why her hysterectomy triggered depression and anxiety how sharing about her chronic illnesses helped her find healing why she chooses to be intentional with her energy that in order to embrace your future, you have to face your past

    144: Endometriosis & Autism Advocate Kendall Rayburn

    Play Episode Listen Later Jan 19, 2022 83:10


    Originally launched as a means of sharing her craft projects, Kendall Rayburn's namesake blog has since evolved into her passionate full-time occupation: a place to pour her heart into content across the lifestyle spectrum (see: plus-size fashion, family-friendly travel and activities, home decor, recipes, and more). It has also become a powerful vehicle for sharing her struggles with endometriosis — all with the token contagious positivity that's garnered her a devoted following. Add to that her candid takes on being a Spoonie mom to son Wyatt, who lives with autism, and you've got an oasis of advocacy and lifestyle like no other. We dare you not to fall in love with the happy, hectic world of Kendall! Tune in as Kendall shares: how she was gaslighted from an early age to believe her period pain was normal that she became aware her son was on the autism spectrum when he was 18 months old that she also lives with anxiety, depression, and PTSD following adverse childhood experiences that she was diagnosed with endometriosis at 22, and told by her doctors that she was so far advanced in her disease that she needed to consider starting a family immediately if she ever wanted to have one that the pain of her diagnosis forced her to finish college online that after her second child, she was offered a hysterectomy for her pain — and that by the age of 26, she was undergoing menopause that to this day, she has had eight surgeries for her pain — and it is still debilitating why she regrets her hysterectomy that she was never offered therapy as she navigated both her diagnosis and her son's — and why it plays such an important role in her life now how medical research has failed her as a woman living with stage IV endometriosis how she manages her pain now what her son has taught her about resilience her advice for others living with chronic pain and/or advocating for others

    143: Dr. Akilah Cadet, DEIB Specialist Living with Rare Heart Disease & hEDS

    Play Episode Listen Later Jan 5, 2022 62:14


    Dr. Akilah Cadet is the Founder and CEO of Change Cadet consulting firm, which offers a broad array of anti-racism and diversity services including strategic planning, crisis rebuilding, advising, executive coaching, and facilitation. Cadet (her last name) is a French term that means soldier. As it's often an uphill battle for BIPOC, women, and historically excluded communities to achieve success and equity in the workplace, Change Cadet prepares soldiers of change to overcome these continuous battles so individuals and companies can thrive. Akilah has 15+ years of experience working in various organizations, with both private and public sector companies. She literally has all the degrees (Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior), lives in Oakland, CA, has a rare heart condition, and is a proud Beyoncé advocate…and has just been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). And on top of all that, she's the host of the Change Cadet Podcast! Tune in as Dr. Cadet shares: how her early symptoms first manifested the truth about accurate diagnosis: “in order to be diagnosed, you have to be misdiagnosed” how she was diagnosed with coronary artery spasms, or Prinzmetal's angina; as well as inappropriate sinus tachycardia, pre-atrial contractions (irregular heartbeat), and orthostatic hypertension how she faced her own mortality during the process of being diagnosed what her long-term care looks like with regard to heart health: ER visits and the risk of heart attack the criteria she holds her care providers to why she is still waiting for genetic testing to determine her hEDS type how she manages her symptoms day-to-day — and how so much of that management involves clear communication what true energy management looks like for her why the “ER is nothing but trauma for [her]” — and why healthcare in America is such a mess a conversation about the concepts of intersectionality and inspiration in chronic illness and disability identities her advice for Spoonies and their loved ones

    142: Racism Is A Public Health Crisis with Dr. Faith Crittenden

    Play Episode Listen Later Dec 22, 2021 40:03


    Faith Crittenden, MD MPH is a recently-graduated pediatric resident with her Doctorate of Medicine from the University of Connecticut School of Medicine. While a student, she was an active member of the Student National Medical Association (SNMA) and the American Medical Association (AMA). In 2016, she was appointed as the national liaison for SNMA to AMA — Medical Student Section. She has helped the progression of organized medicine in many ways — most recently is a co-author on several historic policies passed through the AMA House of Delegates, such as: Racism is a Public Health Threat, Racial Essentialism, and Combating Police Brutality. This year, she also added Combating Natural Hair and Cultural Headwear Discrimination in Medical Professionalism to this list. Faith was also the Deputy Editor for the Yale Journal of Biology and Medicine March 2021 preventative medicine issue. This TedX alumna has also landed coverage around the country through op-eds and articles featured in Health Affairs, Hartford Courant, CT Mirror, Yale Daily, and In-training.org. Faith knows that in order to change the culture of medicine, we must evaluate and critique the health policies of the past, present, and future. In April 2020, she launched a podcast called Coloring Health Policy which focuses on how health policy impacts minority communities, both domestically and internationally. Faith holds a Bachelor of Science degree in chemistry, Minor in molecular cell biology with Honors from the University of Connecticut, and Masters of Public Health in Health Policy from Yale University. Tune in as Faith shares: how she has confronted trauma-informed services in healthcare, and how her early experience shaped her interest in medicine the importance of prioritizing mental health care about her historic role in having racism declared a public health crisis by the AMA how hard she and her team worked to have this policy passed by the AMA her hope that more BIPOC train as physicians in the future — and that these recent policy declarations can help pave the way how to get involved in activism locally, to support ongoing work in racial justice and healing the role of Black men in healthcare reform in America where her advocacy work is headed next: to addressing natural hair and cultural headwear discrimination 

    141: What We Really Mean When We Talk About OCD — With Pooja C. Danay

    Play Episode Listen Later Dec 8, 2021 73:51


    Pooja C. Danay is a South Asian mental health advocate who lives with obsessive-compulsive disorder (OCD). An actor, entrepreneur, and dancer who specializes in Bollywood dancing (been doing it since she was 5 years old!), she loves traveling and spending time with family and friends. Born and raised in New Jersey and currently living in NYC with her husband, she attended Pace University and the Lubin School of Business. She is proud of her culture: where her family comes from (India) and its rich traditions. She is a huge believer in advocating for what you believe in, and hopes that speaking up and sharing her story can help others and inspire hope.  Tune in as Pooja shares: that she was diagnosed with OCD at the age of 13, but recognized symptoms earlier than that that her symptoms manifested with obsessive thoughts, compulsions, depression, and anxiety that OCD is an anxiety disorder, and the compulsions are usually designed to give someone a sense of control when they don't feel they have it how her background influenced her approach to mental health care — because mental health and illness can be a taboo topic in South Asian cultures one of the biggest challenges of her diagnosis: finding an appropriate therapist how her diagnosis affected her relationships, especially as a teen why dealing with mental illness is such a lonely experience, especially early on why support and community is as vital as finding the right care providers what ERP (Exposure and Response Prevention) is, and how it has helped her mitigate the negative aspects of her disorder how stress can influence her symptoms how OCD affected her in the workplace early in her career, and how it influences her treatment of employees now what we most desperately need to change about American healthcare in order to best serve patients in need her thoughts on using medication to manage her illness her advice for others living with chronic and/or mental illness why we need to destigmatize conversations about mental health and illness

    140: Rare Diseases Lesotho Founder Nthabeleng Ramoeli

    Play Episode Listen Later Nov 24, 2021 113:59


    Nthabeleng Ramoeli was born in the small southern African country of Lesotho. At the age of 12, she began to experience chronic pain and subluxation of her joints, in addition to extreme skin elasticity, GI and lung issues, and anapyhlaxis. These symptoms persisted through her admittance to university, where test after test came back inconclusive. So, she began her own research…and stumbled upon Ehlers-Danlos syndrome (EDS). While her diagnosis was eventually confirmed, none of the practitioners in her region knew what EDS was — or how to treat it. She found herself arguing with doctors every time she had contact with the medical system, as most couldn't admit the limit of their own skills and knowledge. In 2014, she was in an accident in which she sustained over 10 broken bones down her spine, among other injuries. A spinal specialist informed her that EDS had saved her life: her joints were so hypermobile, the impact hadn't shattered her spinal cord…and while she spent close to a year in rehabilitation, she can walk again today. In 2017, she founded Rare Diseases Lesotho Association (RDLA) in order to serve others living with rare disease in her corner of the world — by raising awareness, providing care and education services, and bringing those who feel alone into community. In 2020, this led to the creation of the Rare Diseases African Alliance, which also includes the Rare Diseases Namibian Alliance. As an activist and advocate for EDS and other rare diseases, Nthabeleng has found ways to cope with her diagnosis despite the hardships she faces — and is fueled by helping others live as comfortably and fully as possible with rare disease. Tune in as Nthabeleng shares: when she first started experiencing symptoms of EDS, and how she was diagnosed how she struggled with doctors who didn't understand her diagnosis and treatment how her constellation of symptoms finally made sense when she discovered EDS in her research her experience in a psychiatric hospital, which further proved her diagnosis was not in her head the degree to which her organs are involved in her EDS type how her diagnosis has impacted her relationships how and why she founded RDLA how disability has transformed her presence in the world how you can support RDLA's efforts her advice for others living with invisible disability

    139: The Boys of Bolus Maximus on Life with T1D

    Play Episode Listen Later Nov 10, 2021 101:24


    The idea behind non-profit community support organization Bolus Maximus began in late 2017 when Matt Tarro and Brandon A. Denson started having weekly discussions about their lives with type 1 diabetes (T1D). Coming from completely different backgrounds, the two actually had a lot in common — and recognized they both wanted to change the narrative around men's freedom to express their emotions. Brandon has taken the helm of this movement in an effort to address the sheer lack of Black faces on organizational boards. A stand-out linebacker and walk-on at Michigan State, Brandon has played football at the highest level while living with diabetes (and earned a Bachelor's degree in Criminal Justice while he was at it). His devotion to community, specifically working with young Black diabetics, is nothing short of inspiring — and his career in the AFL, CFL, and NFL has allowed him to connect with more and more young people living with his condition. Extreme sports suit Brandon's counter-part, Matt, who grew up in a medical family and spent 10 years in digital advertising, media, and marketing. With a background in creative design and brand development, their work together is just getting started. Fun fact: Brandon was the first Black man with T1D to compete on an aired episode of American Ninja Warrior! As Matt & Brandon say, “Remember: it's OK to ask for help, show emotions, or have bad days. Let's talk about tough stuff.” Tune in as Brandon & Matt share: when and how they were both diagnosed with T1D that when they were diagnosed, there was not support for teenage males with T1D how technology advancements in diabetes care has changed their lives how they were inspired to start giving back to their community why chronic illness diagnoses can be so taxing — beyond the physical the impact of Matt's diabetic alert dog, Forest, on his life how their diagnoses have impacted their relationships what inspires them every day why mental health support is so vital to survival with a chronic illness when and why Matt began to address substance use a discussion of ADA compliance in addressing individuals who work with service animals (and the animals themselves) a discussion of access issues with regard to medical care and equipment for diabetes management why money matters in the healthcare system their advice for living well with T1D

    138: Morgan Greene — Is, Was, Will Be with MG

    Play Episode Listen Later Oct 27, 2021 73:28


    Morgan Greene is a chronic illness and holistic wellness blogger and content creator at Is Was Will Be blog. After being diagnosed with rare chronic illness Myasthenia Gravis (MG), Morgan started writing to process her experience — “serving as both therapy and accountability” for her, as she so aptly puts it. As her journey progressed, she found solace in putting into words what many of her fellow Spoonies were experiencing. What started as a hobby has turned into a passion, as Morgan continues to spread awareness about living with chronic illness and inspiring women to live their illest lives. As she details on her blog, “I challenge you not only to share the journey with me, but also to start one of your own. It is my hope that through my words, you will find the fuel to ignite your own personal revolution. That you will finally start living according to your own…happiness. There's no easy button. It's not going to happen tomorrow, next week, or even next month. But if you just start, one day you will be able to wake up to a life you made happen.” Tune in as Morgan shares: how her symptoms started, and how she was initially diagnosed the importance of working with a specialist for your condition what her MG treatment looked like — and how a thymectomy brought her MG into remission what MG is: a neuro-autoimmune condition why seeking support and community is vital as a Spoonie how her diagnosis helped her strengthen her self-love practices how MG has changed her approach to exercise how MG has shaped the way she sees her life now how reducing toxins in her daily life has improved her health why holistic wellness has become a major interest for her her top tips for thriving with chronic illness

    137: Lyfebulb Founder Dr. Karin Hehenberger

    Play Episode Listen Later Oct 13, 2021 68:09


    Dr. Karin Hehenberger has close to 20 years of experience in the life sciences sector. She served as an executive at Eyetech Pharmaceuticals and Coronado BioSciences, and had strategic management roles at Johnson & Johnson (Vice President, Metabolic Strategy), JDRF (Senior Vice President, Strategic Alliances), and McKinsey; as well as senior partnership roles at public (Brummer & Partners) and private (Scandinavian Life Science Ventures) multibillion-dollar investment funds. She received her MD and PhD degrees from the Karolinska institute, and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Inspired by her background and diagnosis of type 1 diabetes, she is the founder and CEO of Lyfebulb. Tune in as Karin shares: that she was always in good health — but that at the age of 16, this changed that shortly after, she was diagnosed with type 1 diabetes the fear that came along with her diagnosis what she wishes she'd done differently after her diagnosis that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously what qualifies diabetes patients for pancreas transplants how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb how she also realized that patients need patients — and how this plays into Lyfebulb's community today how she manages the side effects of her immunosuppressants the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need the obstacles presented by the American healthcare system what it was like to entertain motherhood as a patient on immune-suppressing drugs

    136: When It Hurts to Hear — Hyperacusis Awareness Founder Jemma-Tiffany

    Play Episode Listen Later Sep 29, 2021 62:58


    Jemma-Tiffany is a 17-year-old writer, passionate patient advocate, and founder of Hyperacusis Awareness. Having grown up with severe hyperacusis (a rare and poorly-understood disorder that causes her to experience physical pain from everyday sounds) has motivated her to raise awareness of others with similar conditions. Through her various efforts, Jemma has gained experience in patient advocacy and legislative change campaigning, and has been able to participate in numerous awareness-raising events. The goal of her work is to create a world in which those with hyperacusis, chronic pain, and rare disease are believed — and are offered all the unique environmental modifications and services they need to live pain-free, comfortable lives. Her current advocacy projects include: adding a title 6 (Telepresence and High-Level Sensory Modifications) to the ADA; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; and a recent Hyperacusis Awareness Conference; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. Jemma-Tiffany has been featured and published by Migraine Magic, PatientDX, the Hearing Health Foundation, the American Chronic Pain Association, Rare Youth Revolution, and The Third Estate, among others. Tune in as Jemma-Tiffany shares: that she was born with cataracts, and is low vision/legally blind that she didn't start experiencing issues with sound until she was about six years old that she was initially diagnosed with chronic migraine, but was eventually diagnosed with hyperacusis that hyperacusis was originally thought to be a psychosomatic condition — and as such, she has had to endure a lot of painful treatments how diagnostics have changed in recent years, as it regards hyperacusis that there is currently no complete treatment for hyperacusis what hyperacusis is, and how it can affect patients differently that the cause of hyperacusis is unknown, even in Jemma-Tiffany's case how she has grown into a patient advocate how COVID has positively impacted her educational experience, enabling her to receive more supportive accommodations why she was driven to attempt suicide how she has been gaslighted over and over — in medical settings and beyond how some alternative therapies have helped her (though they have not cured her of her pain): TENS and PEMF, among others that she has been doing her own medical research since she was 11 years old, in order to present information to her doctors what she's working on right now her advice for other young people living with chronic pain

    135: Defining Heroism: A 9/11 First Responder's Story

    Play Episode Listen Later Sep 15, 2021 106:15


    * * * TW / CW : mortality, and graphic discussion of the events during and in the aftermath of 9/11, 2001 * * * Twenty years after 9/11, some first responders are still struggling with long-term health complications brought on by the historic event. For Tom Frey, a former NYC detective, the consequences started with a diagnosis of Hodgkin's lymphoma — the treatment for which then caused pulmonary fibrosis (PF) — a life-threatening, incurable lung disease. His illness can be linked back to inhaled dust from his rescue and recovery efforts at Ground Zero. Tom's not alone. Officials worry that deaths of 9/11 first responders due to illnesses caused by exposures at Ground Zero will soon outnumber deaths of those who lost their lives that day. Despite Tom's terminal health struggles, he works hard to drive awareness, research, and funds for a cure for pulmonary fibrosis – especially during Pulmonary Fibrosis Awareness Month, which happens to be in September. A true hero, Tom will tell you he would do it all over again tomorrow, even as he struggles daily to breathe and relies on oxygen. Tune in as Tom shares: how he was first diagnosed with Hodgkin's lymphoma in 2016 — as a result of inhaling toxic dust during and in the aftermath of 9/11 how one of his chemo drugs caused his pulmonary fibrosis diagnosis that the only cure for PF is a lung transplant — and his has been on hold because of COVID how the Pulmonary Fibrosis Foundation has changed his life the trauma of working in rescue and recovery after a disaster like 9/11, and the importance of talking about it how waiting to die — and not dying — forced him to live again…and why he hasn't stopped moving since who his heroes are: nurses and doctors that while the average life expectancy for pulmonary fibrosis diagnosis is 2-5 years, with the right support it can be extended the difficulties he's had dealing with the United Healthcare World Trade Center Fund to cover his life-saving treatments his plea that we take sensible precautions against COVID — like wearing masks a look back at what it was like on the ground on 9/11, and in the days following the attacks a reminder of all the individuals who were on the ground on 9/11, and whose lives and health have been impacted as a direct result

    134: Sara Naveed is Fabulous & Fatigued

    Play Episode Listen Later Sep 1, 2021 80:47


    Sara Naveed is a Canadian writer, chronic illness advocate, and founder of the blog Fabulous and Fatigued. 14 years ago, she was diagnosed with fibromyalgia following a hit-and-run. Inspired by her experience, she started the blog with the aim of creating awareness and ending the stigma of life with chronic illnesses. Her work has been published in various media outlets and platforms including Yahoo, MSN, The Mighty, The Tired Girl Society and DPC Education Center. Tune in as Sara shares: details of the hit-and-run that eventually triggered her diagnosis what the diagnosis and acceptance processes were like for her, as a teenager how chronic pain has changed her life how fibromyalgia manifests in the body how discovering accessibility services supported her in college that taking holistic approaches to her symptom management has been very supportive for her where she has encountered “toxic positivity” in the reactions of family and friends how her diagnosis has impacted her relationships how she has worked on her mindset to cultivate balance in her life her experiences of acceptance and bias within the medical system, as a Muslim woman of South Asian heritage why she uses CBD to manage symptoms from insomnia and anxiety to chronic pain how the immigrant experience — from a language perspective — impacts healthcare access how the Canadian healthcare system needs improvement in order to better serve patients a reflection on her early experience of chronic illness, and how it inspires her current work the importance of community in ongoing healing and acceptance

    133: This Thing They Call Recovery's Jenny McGibbon on The Nuanced Experience of Living with a Disability

    Play Episode Listen Later Aug 18, 2021 76:11


    Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.” Tune in as Jenny shares: how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment how she got an ME/CFS diagnosis the symptoms that impact her most acutely — pain and fatigue a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing” why she owes her life to the NHS how and why she started This Thing They Call Recovery what disabled identity means to her what the community she's cultivated means to her why there doesn't always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is

    132: Lupus Advocate Cass Rush

    Play Episode Listen Later Aug 4, 2021 74:57


    Cassandra Rush is a lupus advocate born and raised in Los Angeles, CA. In 2012, after a two-year battle with an undiagnosed illness due to being uninsured, she was finally diagnosed with Systemic Lupus Erythematosus (lupus SLE). Two years later she was diagnosed with lupus nephritis. An “accidental advocate”, she speaks out about the broken US healthcare system, with a particularly detailed lens on medical racism and systemic bias. She was recently selected as a subject in the documentary series Trust Me, I'm Sick (now streaming on SoulPancake), wherein she shares about her life with lupus. And she's on the pod to tell us even more. Tune in as Cass shares: how she was gaslit at the early onset of her illness that she was 22 when she first got sick that her diagnosis has brought her to the brink of her own mortality how her battles with health insurance have caused emotional distress over ongoing debt how her diagnosis brought her closer with her mom how her diagnosis has affected her mental health how the COVID pandemic has played into systemic ableism how her diagnosis has affected her plans for the future the irony that accommodations have readily been made available in the workplace because of the pandemic, but that the disabled community has been requesting them for decades access issues in healthcare, from financial obligation to racism

    131: Faith Ashenden of That Healing Feeling

    Play Episode Listen Later Jul 21, 2021 57:54


    Faith Ashenden is the founder and CEO of That Healing Feeling. She is a global patient empowerment mentor, master mindset coach, and biohacking expert who helps women hack the system and get their health back holistically, using 1-1 coaching, online courses, a podcast, and social media accounts with over 40k+ followers. Faith empowers people to ask the right questions, bust through limiting beliefs, detox their environments and bodies, and start using food as medicine. She's also overcome Graves' disease and Adderall addiction…and she's on the show to share her story! Tune in as Faith shares: that she underwent radioactive iodine treatment for Graves' disease that she has also healed her gut from Candida and SIBO, and her immune system from EBV — all through holistic methods how she developed Adderall addiction, and kicked the habit why her Graves' disease was so difficult to diagnose how she's detoxed her day-to-day and reorganized her life with her wellness as a priority why the root-cause approach to healing is so important to her — and why it can be financially inaccessible to many some suggestions to switch-and-ditch and reduce daily toxin exposures in your home and life

    130: Actor & MS Advocate Damian Washington

    Play Episode Listen Later Jul 7, 2021 54:53


    Damian Washington is an actor who's done 30+ commercials for brands like Fruit of the Loom, Realtor.com, and the NFL. Originally hailing from NYC, he attended the prestigious LaGuardia High School for the Performing Arts (Fame, anyone?!). A few years ago, he was diagnosed with multiple sclerosis (MS)…and soon discovered that developing an MS community is the best way to share his light with the world. Damian's weekly YouTube channel has several thousand engaged subscribers; he sits on Genentech's Patient Advisory Board and the MS Focus Patient Advisory Group; and he makes content for MS Views & News. He's also been featured by the National MS Society and Shift.MS. Damian was the winner of the WEGO Health Award for Best in Show: YouTube in 2020. Some say they find the silver lining in the dark MS cloud, but Damian says he's turning poop into flowers…and that the engaged community that's developed out of his shares is one of the best things to come from this horrible disease. Tune in as Damian shares: that his wife was the first to note a dip in his energy — which led to his MS diagnosis, about three months later why his diagnosis was both a validation and a relief why he's open to multiple approaches to his health why meditation has been a useful tool for him — and how he learned to meditate with a friend when he first moved to LA how his identity forces him to navigate prejudice, and potentially triggering situations how sharing his MS journey launched his YouTube channel into visibility his lessons for others living through similar experiences

    129: ADHD Advocate Dani Donovan, Illustrator & Creator of #NeuroDiverseSquad

    Play Episode Listen Later Jun 23, 2021 75:59


    Dani Donovan is a purpose-driven designer who creates cathartic ADHD (attention-deficit/hyperactivity disorder) illustrations and a community of validation and solidarity for adults living with ADHD. Her first infographic, “ADHD Storytelling,” went viral within hours and amassed over 100 million views. Her work has been reposted by celebrities like Mindy Kaling and featured in publications like the BBC. In a few short months, Dani's relatable comics and her #NeurodiverseSquad hashtag helped her quickly become a prominent voice in the online mental health community. Her comics, jokes, Twitter threads, and TikTok videos aim to help those with ADHD understand themselves, feel a sense of belonging, and better explain their invisible struggle to loved ones. Dani's influence has helped hundreds of people seek diagnosis and treatment for ADHD. She recently left her full-time job to create ADHD content full-time; you can support her work at patreon.com/danidonovan or view comics (and her online shop!) at ADHDDD.com. Tune in as Dani shares: that she also lives with bipolar II and undiagnosed EDS (Ehlers-Danlos Syndrome) why “annoying” is a trigger word for her that she was initially diagnosed with depression; then subsequently dysthymia (persistent depressive disorder), anxiety, and panic disorders how her ADHD presented very differently from the way it did among boys her age, which made her fall under the radar of diagnosis until she was in college how ADHD affects her daily executive functions and impulsivity how her behavior doesn't always align with her expectations, and leads to a cycle of guilt and shame how avoidance plays into ADHD symptom manifestation, and can become debilitating how ADHD and OCD can occur concurrently how her ADHD impacts continuity of care within the medical system “ADHD tax” — when those living with ADHD end up paying more than others because the system is stacked against their success why forming new habits is tremendously difficult for those living with ADHD how her art allows her to communicate her experience with purpose how her work has changed lives — and why that gives her ongoing purpose why social media has been such a rich resource for her her advice for living with ADHD and neurodiversity

    128: Diversability Founder Tiffany Yu

    Play Episode Listen Later Jun 9, 2021 79:00


    Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to amplify disabled voices; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant that has awarded $49.5k to 50 disability projects in 8 countries; and the host of TIFFANY & YU, the podcast. She serves on the San Francisco Mayor's Disability Council and was a 2020 Co-Chair of the World Economic Forum Sustainable Development Impact Summit. At the age of 9, Tiffany became disabled as a result of a car accident that also took the life of her father. She started her career in investment banking at Goldman Sachs and has also worked at Bloomberg and Sean Diddy Combs' REVOLT Media & TV. She is a 3x TEDx speaker and spoke on 5 sessions at the World Economic Forum Annual Meeting in Davos. She has been featured in Marie Claire, the Guardian, and Forbes. Most recently, Tiffany was named one of TikTok's 15 API Trailblazers. It is through this platform that she posts amazing educational content, including the "Anti-Ableism Daily". Go check her out! Tune in as Tiffany shares: her “disability origin story”, which left her permanently disabled — and also took her father's life that she was most recently diagnosed with PTSD related to the accident that caused her disability her take on “toxic positivity”, and how it manifested in her life akin to internalized ableism how her identity as the daughter of Asian immigrants has shaped her experience: “the nail that sticks out is the first to get hammered down” visibility and invisibility in the disability experience what disability inclusion really look like why TikTok has been such an important space for her to occupy in anti-ablest allyship what an ableist micro-aggression is — how to spot them and feedback mindfully how she taught herself to own her disability — and how this realization was the foundation of Diversability four tips for being an ally to the disabled community

    127: Spoonie Artist & Activist Mimi Butlin of @CantGoOut_ImSick

    Play Episode Listen Later May 26, 2021 69:55


    In 2012, while studying at university, Mimi Butlin contracted viral meningitis — from which she never fully recovered. Since then she has been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, and ME/CFS (as Mimi wryly notes, “a really lovely bunch!”). For years, she felt completely alone and that convinced she was responsible for her pain. In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences. Because of her work, including the #BelieveUs campaign, she has been featured in Women’s Health magazine, Grazia magazine, and on Refinery29 and Bustle. Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Mimi is very proud of what was achieved throughout the campaign, which saw disabled influencers, creatives, and celebrities — such a Selma Blair and Sinead Burke!! — wearing her t-shirts and supporting the campaign on social media. She is currently taking a break from her work in order to accommodate her health (and wow, can we relate), but she’s extremely grateful to the people she has met along the way, who have helped her accept her conditions and feel proud of who she is. Tune in as Mimi shares: that of all her symptoms, chronic pain is most in control of her day-to-day that she was diagnosed with viral meningitis, and subsequently with Epstein-Barr Virus (EBV, or mono) and gastroenteritis — multiple times — and never fully recovered a discussion of access issues in healthcare, including the NHS and optional paid enhancements why doctors have a responsibility of care — both emotional and physical how mental health and medical PTSD have played a role in her health experience how she first received notice for her art — from fellow Spoonie, Lena Dunham! how her illnesses changed her relationship with her mum why she recommends those who identify as female bring a cis man with them as an advocate in doctors’ appointments her experiences of not being believed by medical practitioners who has inspired her in the disability community how she’s cultivated pride in her health status how research can give you perspective on your experience — and the experiences of others

    126: The Mata Sisters, Founders of Looms for Lupus

    Play Episode Listen Later May 12, 2021 83:00


    In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness. Tune in as Estela & Juana share: what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA) that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril that if Juana had not advocated for herself, she wouldn’t be here today how Estela was diagnosed with fibromyalgia, along with her daughter why Estela pursues holistic treatment to manage her pain the distinct role of “invisibility” in their illness experiences their experiences of bias in the healthcare system why they created Looms for Lupus, and the importance of providing patient resources in Spanish their tips for managing chronic illness with grace

    125: Fight Like A Warrior Founder Alexa Chronister

    Play Episode Listen Later Apr 7, 2021 41:34


    Alexa Chronister is the founder and president of Fight Like A Warrior (FLAW). She created FLAW after creating the Cards For Warriors program (sending handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone) in 2016. With the goal of creating a community of empowerment and improving the lives of those with chronic health conditions, she developed FLAW as a way to cope with her own health challenges, while giving back to others (and won a WEGO Health award in 2019 to prove it!). In 2020, she received her bachelor's degree with honors distinction in public policy (with a minor in social entrepreneurship!) from the University of Delaware, and completed a thesis focused on health policy and disease advocacy among POTS patients. Never a shrinking violet, she also plans to attend law school and pursue a career in health policy. In response to the COVID-19 pandemic in 2020, Alexa was instrumental in launching FLAW’s #ProtectTheVulnerable campaign, in partnership with numerous patient advocacy platforms including Health Advocacy Summit (founded by former guest Sneha Dave!), Support Fibro (founded by former guest Melissa Talwar), and InvisiYouth (founded by former guest Dominique Viel), among others. Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. [A note that this episode was recorded a year ago, hence features some dated mentions of the #ProtectTheVulnerable campaign and Alexa’s recent college graduation!] Tune in as Alexa shares: how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome) how she has learned to step up into the advocacy space how she manages her health day-to-day why it’s so vital our various practitioners find ways to communicate to one another about our cases how access directly impacts healthcare outcomes and patient experiences what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior why it’s so important to listen to our bodies, especially as Spoonies the importance of self-advocacy what the future holds for FLAW

    124: Julian Gavino, @TheDisabledHippie

    Play Episode Listen Later Mar 31, 2021 62:13


    Julian Gavino (he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. An outspoken advocate for both the trans and disability communities, Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Many may know Julian through his Instagram account @TheDisabledHippie, which he started during a health crisis while in college for neuropsychology. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people. In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representation. Tune in as Julian shares: that he started experiencing symptoms from the age of 5, from digestive distress to dislocations — and was initially diagnosed with Celiac that he largely uses his wheelchair these days, in order to support his mobility that he was recently diagnosed with Hashimoto’s disease, but has been monitoring his thyroid health from an early age that as far as he knows, most of his diagnoses are likely connected to EDS the most significant impact on his health in his adult life: his neurological conditions, including a demyelinating neuropathy similar to MS that can flare without warning the emotional toll of his health conditions — from awareness of mortality to a young age, to the validation of diagnosis that growing up female meant that he was gaslighted over his health frequently how he stepped into self-advocacy that he started his Instagram feed as a way to manage his emotional journey through disability that his treatments include infusions, a feeding tube, multiple medications, physical therapy, and more the supportive role his service dog, Atlas, has played in his life — both physically and emotionally how his gender identity has influenced his experiences within the medical system — including threats to his safety from professional caregivers his thoughts on healthcare reform

    123: Don’t Judge A Book By Its Cover: Shayla Swint on Life with EDS

    Play Episode Listen Later Mar 24, 2021 47:21


    Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, “Don’t judge a book by its cover,” Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She’s survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that “her body’s trying not to fall apart,” it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story. Tune in as Shayla shares: that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it that she was finally diagnosed with hypermobile EDS a decade later that between the ages of 13-18, she had multiple surgeries — and didn’t get her official diagnosis until 2 years ago, at the age of 23 why her diagnosis was validating that one rheumatologist told her, “Black people don’t get EDS” — and her response was to lose all trust in the system for a time the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother that she’s been exploring a vegan diet in order to reduce inflammation that her mom has chronic migraine — and understands what it’s like to advocate and live in chronic pain how she has disclosed and managed her pain in work environments — and where she’s struggled to achieve easy accommodations (even when she presented solutions) how triggering it can be to pursue legal action in disability cases — and why so many individuals don’t do so why remote work during COVID has been so much more comfortable for her the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder how her race has impacted her treatment in the medical system the impact of community on her experience, especially as a WOC why change in our healthcare system is so desperately necessary

    122: Rhisa Parera: A WOC VS The System — And Lyme

    Play Episode Listen Later Mar 17, 2021 86:13


    In the last in our 2021 series on Lyme disease, we are joined by the first WOC to discuss the subject: Rhisa Marie Parera. Though she began experiencing symptoms from a young age, Rhisa grew up as an active young woman in Staten Island, NY, and got heavily involved in the salsa dancing scene and modeling from her late teens into her early twenties. At the age of 19, her health took a serious downward turn; and ten years later, aged 29, she had deteriorated to the point at which she was no longer able to participate in activities that had once brought her joy and connection to her heritage. According to the CDC standard Western blot test, she was positive for Lyme disease…but it took a decade to get there. Given her experience of the medical system, she took it upon herself from the point of diagnosis to get her life back, and has been working with a team of integrative practitioners to do just that. She is the author of the Negra Con Lyme blog — a chronicle of her life as an Afro-Latina with chronic Lyme; and will soon be launching a clothing line for Lymies. She has found strength in community, and hosts a BIPOC Lyme support group that meets weekly via Zoom, Sundays at 3pm EST. Tune in as Rhisa shares: her varied symptoms: a rocking sensation similar to vertigo; migraines; a pulsing sensation in the back of her skull; loss of vision; GI issues; numbness and pain in limbs and joints; seizures; and much more that she also has skeeter syndrome: extreme sensitivity to mosquito bites that she presumes she was infected by a mosquito when visiting her family in Puerto Rico that she has also tested positive for Dengue fever — a viral infection also carried by mosquitoes, largely in the Caribbean that she didn’t get her Lyme diagnosis until 2019 — after going through at least 50 doctors on the road to diagnosis that she was gaslit over and over by various practitioners, frequently prescribed antidepressants, and often sent for psychiatric help as a final solution why she believes fibromyalgia isn’t a true diagnosis that when she was diagnosed with chronic Lyme, her doctor prescribed two weeks of antibiotics and sent her on her way that she’s learned the most about Lyme from her online community how her illness has affected her relationships how her privilege has enabled her to access treatment how Lyme has also put her in early menopause, and affected her fertility — with PCOS her specific experience of racism in the Latinx community why diagnoses of Lyme disease are so much more rare in communities of color

    121: Functional Medicine Health Coach Sharon Leggio Falchuk VS Lyme

    Play Episode Listen Later Mar 10, 2021 94:52


    Sharon Leggio Falchuk, FMCHC found herself bedridden by a serious illness in 2011, and when the mainstream medical system had no answers or help for her she took matters into her own hands. She spent every moment she could doing research, changing her diet and lifestyle, and assembling a functional medicine and alternative care team to help her forge a path to healing. Her inextinguishable will to be well meant she was willing to try almost anything, and one of the life-changing discoveries she made was the true power of mind-body medicine. Once she reclaimed her health, she became a Functional Medicine Certified Health Coach and founded InTended Holistic Wellness, where she specializes in helping people with “mystery illnesses” and chronic conditions, as well as those who are highly sensitive. Sharon’s “less is more” approach stems from navigating her own wellness journey with many sensitivities, and she feels the most important factor in health and healing is in reconnecting with yourself and your unique needs and strengths. As it happens: Sharon has now healed from Lyme disease, and takes on many patients undergoing similar travails. She sat down to generously share her story with us. Tune in as Sharon shares: that she dealt with digestive flares, migraines, chronic pain, and neurological symptoms in her childhood why being a Highly Sensitive Person (HSP) caused her to be brushed aside by practitioners that doctors began to treat her body in silos, prescribing treatments for each area that was causing symptoms that the first time she had any relief was when she received cranial-sacral therapy — a holistic method of treatment how she believes her infections may have affected her son that she was likely reinfected as an adult that Lyme is an ancient bacterium — e.g., Ötzi the Iceman was discovered to have Lyme bacteria in his system that there is some concern her son may have Lyme, and may have been infected in utero — but that ultimately she has opted not to have him tested, and instead is raising him toxin-free that in the early days of her diagnosis, she saw an infectious disease doctor who likened her symptoms to HIV that she healed numerous gut issues with a Candida protocol how her diagnosis was both validating and terrifying that she turned to both Indigenous and Buhner healing protocols to detox from Lyme how trauma and loneliness affect our bodies what drew her to health coaching the importance of stress reduction for our health her reflections on being a chronically ill parent that we are all living with collective trauma due to the COVID pandemic how she’s discovered the importance of healing with mind-body medicine

    120: Lyme & Thyroid Specialist Lisa Hunt, D.O.

    Play Episode Listen Later Mar 10, 2021 32:25


    Lisa Hunt, D.O., D.O.H. is a practitioner at Holtorf Medical Group in El Segundo, CA. She specializes in anti-aging treatment, natural thyroid replacement, menopause/andropause therapy (including bioidentical hormone replacement), chronic fatigue syndrome, fibromyalgia, strengthening the immune system, neurotransmitter analysis/replacement, and nutritional support guidance. Dr. Hunt is a graduate of Western University of Health Sciences and completed her residency at the San Joaquin General Hospital. She is board certified in both Family Medicine and Holistic and Integrative Medicine and brings with her over 20 years of experience as a family physician and medical director. Her mission is to build on every level of your health to achieve the best quality of life. Tune in as Dr. Hunt shares: what drew her to her practice how she handles initial appointments and testing why she lets the patient lead their care, and offers options for testing and treatment the importance of family involvement in a patient’s care how our work-lives are hindering our health why a morning routine can aid us in scheduling self-care (read: meditation!) what the healthcare system in the US is getting right the importance of extended time with patients and individualized nutrition guidance in traditional allopathic approaches why it’s helpful to find an integrative or functional medicine practitioner if you’re struggling with chronic illness other pathways to improve overall health: nutrition logs and good sleep hygiene that her job is to empower her patients to take care of themselves that care is individualized — there is no “one size fits all” approach to testing and treatment

    119: Buenqamino, Lyme & Co.

    Play Episode Listen Later Mar 3, 2021 61:32


    Christina Kantzavelos (@buenqamino // @beginwithintoday) is a Lyme warrior, award-winning freelance writer/content creator, chronic illness advocate, and licensed psychotherapist. She was diagnosed with Lyme disease and co-infections in October of 2018. However, she struggled with debilitating symptoms and various autoimmune diseases for years prior. Her treatment has included a mixture of Eastern and Western modalities, nutritional changes, a switch to non-toxic living, clean beauty, DNRS (neural-retraining therapy), as well as a strong focus on self-care — such as journaling, painting, joining CoDA, and being out in nature. From being couch-bound and sensitive to just about everything (scents, food, EMFs), she is now back in the world, hiking again, and tolerating most foods and scents. Although she is still on the road to healing, she has made a conscious decision to choose an attitude and intention of thriving over an obsession with surviving — and hopes to share that with others. She is also the author of our favorite symptom tracker, the Begin Within Today journal, and the proud momma of a service-dog-in-training, Cowboy. Tune in as Christina shares: that throughout her childhood and into her teen years, she experienced migraines, chronic pain, panic attacks, digestive problems, and numerous other unexplained symptoms that she lost her brother to cardiomegaly when she was 19 that when she got checked for cardiomegaly, she was actually diagnosed with POTS that it took nearly 2 decades for her to receive her Lyme disease diagnosis after grad school, she was diagnosed with Celiac disease — and has been gluten-free ever since that her health continued to deteriorate to its lowest point in 2018, when she was first referred to a rheumatologist — who was also an LLMD that she doesn’t recall ever being bitten by a tick, but has been bitten by tons of mosquitoes…and reminds us that mosquitoes appear to be able to carry Lyme, as well that she was additionally diagnosed with giardia, Lyme co-infections, and had been exposed to mold she was also diagnosed with lupus, Sjogren’s, and mixed connective tissue disease — all of which appear to be manifestations of her chronic Lyme disease that treatment for Lyme knocks you off your feet — the Herxheimer reaction is truly horrific: “it gets worse before it gets better” that her parents had to begin caring for her before she even began treatment that she’s additionally been diagnosed with mast cell activation syndrome (MCAS) that she now considers herself to be 60-70% better, and has redesigned her lifestyle to support healing from her chronic illnesses as best she can that she has always been her own best advocate, in no small part because her parents are immigrants that she and her parents worked through trauma together and in some ways, her illness has created that space for emotional healing that the people who take care of us are experiencing second-hand trauma a discussion of accessibility to healthcare in America how the Begin Within Today journal was born of her own experience that she has seen over 50+ doctors throughout her chronic illness experience the importance of reducing toxins in our everyday lives, from EMFs to diet

    118: LLMD Dr. Casey Kelley

    Play Episode Listen Later Feb 24, 2021 50:07


    Casey Kelley, MD, ABoIM is the founder and medical director of Case Integrative Health. Dr. Kelley is relentless about getting to the root cause of chronic disease and transforming health through Functional Medicine. On faculty at Northwestern's Feinberg School of Medicine, she is Board Certified in Family Medicine and was also among the first physicians to become Board Certified in Integrative Medicine. She has studied the causes, effects, and treatments of disease extensively, and lectures nationally on this and other topics. Dr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago. She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a Founding Member of the Academy of Integrative Health and Medicine (AIHM). Prior to founding Case Integrative Health, Dr. Kelley practiced medicine at WholeHealth Chicago, Michigan Avenue Immediate Care, and St. Joseph Hospital. And get this: she is not only an LLMD treating those living with chronic Lyme — but she was once also a patient herself. This ep is not to be missed! Tune in as Dr. Kelley shares: that she founded Case Integrative Health 2 years ago; but has been in the integrative health field for over 8 years that she dealt with chronic fatigue, brain fog, and other symptoms for years until she discovered they were part of a Lyme diagnosis that she wanted to “create a place for people with chronic illnesses who were misunderstood by conventional medicine, and needed a different approach” that she is already seeing new patients living with long COVID — a “post-immune issue”, much like chronic Lyme that she trusts her patients to know their bodies better than she does — and so, she believes them why integrative practices can save the healthcare system money (in preventing chronic disease) that the science supporting the existence of Lyme diagnosis and treatment is REAL and readily available that much Lyme testing currently available is inadequate; more funds are needed for greater research and development how doctors are strapped by the system of private interest in healthcare why she has divested from the health insurance model in her practice — and wants her patients to get better, so will always find a way to work with them to make their care accessible that financial support is always available to patients through various Lyme advocacy groups that she was diagnosed with POTS during med school, but was actually living through chronic Lyme all the varied symptoms that can be associated with Lyme the importance of thorough tick checks after going outdoors where ticks are most likely to be found on the body how she treats Lyme in her practice that she is licensed in several states, and practices telemedicine for patients outside of the Chicaco area how she celebrates patients who make it through chronic Lyme treatment

    117: Alex Moresco, Lyme Advocate & Co-Founder of Advocacy Express

    Play Episode Listen Later Feb 24, 2021 62:48


    Whether it’s hiding the likes of Pamela Anderson from paparazzi or helping NeNe Leakes pretend to sell furniture…Alex Moresco has a story about it. A PR executive from Chicago, four years ago her life was turned upside-down by undiagnosed illness. It took her two years and eight specialists (a shorter time than most, she admits) to find a doctor that would eventually crack the case: tick-borne illness. She quickly realized what mattered in life: philanthropy, advocacy, and lobbying for more accessible and evidence-based healthcare. Moresco has gone on to raise hundreds of thousands of dollars for tick-borne illness research, and makes frequent trips to DC as part of that work. In 2020, she co-founded Advocacy Express, an automated advocacy platform that makes it attainable and efficient for constituents to lobby their Representatives for tick-borne disease-related and healthcare change. Featured on People, Fox, Michigan Avenue Magazine, Swaay, and various other outlets, she joined us to share her story and remind why advocacy matters. Especially for those living through Lyme. Tune in as Ali shares: how her symptoms were written off by practitioners: as a cold, flu, stomach flu, food poisoning, ear infections, depression, and more that while she was being brushed aside by practitioners, her symptoms progressed so much that she became bedridden a recognition of her privilege in accessing varied treatments — Eastern, Western, antibiotics, ozone, IV therapy, peptide therapy, IVIG, and more that she has multiple confections, dysautonomia, and Specific Antibody Deficiency as a result of her Lyme infection that one of her doctors had the wherewithal to send her to an LLMD for confirmation and treatment that so many Lyme patients are abandoned by friends, family, and practitioners how her illness has impacted her relationships the importance of mental health support through chronic illness — and that she finally sought professional support after losing a close friend to Lyme the disproportionate disbelief of chronic Lyme patients, and the need for systemic change in order to validate their experiences and create practical solutions why she is committed to helping raise voices in more marginalized communities why it’s more critical to DO THE WORK of erasing stigma and addressing systemic oppression behind the scenes, rather than solely taking part in performative action what drove she and her husband to establish Advocacy Express — and how they are leveraging the platform to create legislative change in healthcare what we need to change about medical education in the US — and why more doctors need to be educated in chronic disease (outside of what’s easily treated with pharmaceuticals) why it’s a crime that insurance companies require patients to be “sicker” in order to address their needs — and thus create long-term dependence on treatments, rather than covering preventive treatments in the short-term that there is hope

    116: Lyme Survivor & Life Sherpa Gena Chieco

    Play Episode Listen Later Feb 17, 2021 38:22


    Gena Chieco is a coach, adventurer, and connector who loves inspiring clients to step into their best lives by providing tools to help them tap into their inner wisdom and dreams. She grew up in a rural suburb of New York City running around barefoot in the summer, obsessed with nature, with dreams of becoming a zoologist. After earning a BA with Honors in Psychology from Northwestern University and a JD from the University of Virginia School of Law, she had the privilege of working for the Obama Administration. She contributed to a variety of initiatives, including immigration reform at the Department of Homeland Security and environmental issues at the White House. She left federal service in 2017 to serve as General Counsel & Chief of Staff to the CEO of a cleantech startup, marrying her passion for the environment and entrepreneurial spirit. The following year, while on an extended travel sabbatical, she began her coaching journey by enrolling in Dr. Martha Beck’s Life Coach Training Program. She realized that she has always been a coach in spirit – whether helping friends find jobs they love, encouraging team members to build upon their passions, or serving as a confidante to executives. All this, and she is no stranger to resilience, having lived through more than one challenging life chapter followed by a phoenix rising experience. Perhaps most relevant to our chat in this episode: she’s a survivor of Lyme disease. Her experience is best captured by the Mizuta Masahide haiku, “Barn’s burnt down – now I can see the moon.”  Tune in as Gena shares: that she was likely bitten by a Lyme-carrying tick as a child, but wasn’t diagnosed until she was a teen that antibiotics had shot her immune system, and she was plagued with bacterial infections that it took her five years to heal once she started to exhibit symptoms the role of mindset shift in her healing journey why she had to love herself as much as (or more than) she despised her illness the importance of consistent holistic wellness in her ongoing health that she hasn’t had symptoms for over a decade now how her relationship to her body has changed through her healing journey that she started therapy when she was experiencing Lyme symptoms — and how vital mental health support was during that time that she was intermittently told by medical professionals that her symptoms were all in her head how getting sick — and getting well — has been a gateway for her to uncover her most authentic self

    115: Integrative Rheumatologist Dr. Micah Yu

    Play Episode Listen Later Feb 10, 2021 50:28


    Dr. Micah Yu is an integrative rheumatologist who incorporates complementary medicine with traditional rheumatology. He is double board-certified in internal medicine and lifestyle medicine. He obtained his MD from Chicago Medical School, and holds a Masters in Healthcare Administration and Biomedical sciences. He completed his internal medicine residency and rheumatology fellowship at Loma Linda University in Southern California. He is currently in his 2nd fellowship at the Andrew Weil Integrative Medicine Fellowship at the University of Arizona. Dr. Yu is not only a doctor but he is also a patient himself. He has spondyloarthritis and gout, and uses his social media presence to bring awareness to autoimmune disease and chronic pain, and to unpack how we can use complementary medicine to fight these problems. Basically: he’s the doc we’ve all been looking for. And in this episode, we also dug into the COVID vaccine…is it safe for autoimmune disease patients? Tune in to find out! Tune in as Dr. Yu shares: that he works with his wife, who is a family doctor also certified in lifestyle medicine…and lives with ADHD and IBS herself that he developed gout — an arthritis disease — after going on the Atkins diet as a teen that in college, his gout evolved into severe arthritis how he pushed through his pain during medical school that he was drawn to specializing in rheumatology because of his own diagnosis that he was never offered mental health or nutrition/lifestyle support for his diagnosis of spondyloarthritis — and it’s inspired him to become the doctor he is today, and buck the system hat chronic diseases are increasing by 7% a year that he used to see his diagnosis as a curse; but he now sees it as an asset in his work that lifestyle medicine centers on whole-food, plant-based nutrition that he was inspired after watching Forks Over Knives — and when he experimented with a plant-based diet, his inflammatory markers decreased significantly that he’s using lifestyle to manage his health, and is trying to avoid medication until absolutely necessary why he spends at least an hour with new patients that he’s been moonlighting two nights a week treating and admitting COVID patients to the ER why post-COVID syndrome is so frightening that he’s witnessed new-onset autoimmune disease following COVID infections in formerly able-bodied people who had a genetic predisposition to the diagnoses how the flu vaccine compares to the COVID vaccine what mRNA and adenovirus are that mRNA and adenovirus do not alter genetic code or DNA the short-term side effects of the COVID vaccine that the COVID vaccine has indeed been tested thoroughly, and no less so than any other vaccine released to the public that, in VERY rare cases, it’s possible to contract autoimmune disease because of vaccination — and that this is known as ASIA (autoimmune induced by adjuvants) syndrome that he practices remotely, and currently has 15 state licenses in order to serve his patients his take on the US healthcare system

    114: Black Disabled Artist Rana 2.0

    Play Episode Listen Later Feb 3, 2021 53:42


    Artist Rana Awadallah grew up surrounded by poverty, abuse, and trauma. Diagnosed with major depression and extreme anxiety at the age of 18, she always felt there was something “wrong” with her body. Then, at the age of 24 — after having dealt with chronic pain for a decade — she was diagnosed with osteoarthritis in both of her knees. Shortly after, she was diagnosed with fibromyalgia, PCOS, and possible endometriosis. Having not been taken seriously by loved ones or doctors for years, these diagnoses came as a validation. But they also signaled aggressive change. Because her pain prevented her from continuing work in her dream job (as a chef), these disabilities also created the opportunity to pursue art from home — something she’d had a passion and talent for her entire life. Within a year, she has created a thriving community of fellow Spoonies, inspiring them through her work. She’s taken on brand ambassadors, connected with leading lights in the patient advocacy community, and now…she’s ready to share her story. We are thrilled to welcome the lovely and kind Rana2.0 to Uninvisible Pod! Tune in as Rana shares: that she struggled with a weak immune system as a kid that she started having chronic knee pain at the age of 15 that she was recently diagnosed with osteoarthritis in both of her knees that her previous diagnoses of depression and anxiety were blamed for her physical issues early on — and she was brushed aside by doctors and her pain not taken seriously how her physical pain began affecting her ability to work that she experienced debilitating pain from the onset of her period — and realized eventually that it wasn’t normal the textbook PCOS symptoms she experienced how the PCOS diagnosis was validating that she uses cannabis regularly to manage her pain and mental health what her day-to-day looks like as she works around chronic pain how her upbringing influences her momentum to this day — the idea that she should overcome and carry on the importance of listening to our bodies that she grew up in a strict Muslim household — and her family denied her mental health struggles how her identity has impacted her experience in the medical industry why it’s vital for her to vocally support the Black disabled community

    113: Myositis Thriver Michole J

    Play Episode Listen Later Jan 27, 2021 58:52


    Michole J lives with rare muscle disease polymyositis (PM), which falls under the umbrella of muscular dystrophy. PM is an uncommon inflammatory disease that affects the entire body — and while Michole began to exhibit symptoms in her late 20s, she was diagnosed at age 30 with the rarest form. Living with the condition create mobility challenges, from climbing stairs, lifting objects, raising her arms, and even becoming rapidly exhausted from any kind of movement, to breathing issues due to the spread of inflammation to her lungs. Michole’s mission is to bring more awareness to invisible illness, reminding us that we may not all have the same illness (or any illness at all), but that our struggles are still the same. Tune in as Michole shares: how she first started experiencing symptoms that it took almost three years and several hospitalizations for her to get a diagnosis that her symptoms overlap with numerous other chronic illnesses that polymyositis is a progressive disease, and largely affects her limbs that she was never offered mental health support along her diagnosis and treatment journey that she’s now got the additional diagnosis of ILD — interstitial lung disease the struggle of being believed when living with invisible illness how her mother has stepped up as an advocate for her since her diagnosis, and how they have become even closer as a result how caregivers experience chronic illness and disability alongside their loved ones the importance of remote work opportunities for her why the cost of healthcare and treatments can be debilitating for patients discrimination she’s faced from the public how race has impacted her experiences in the medical system (and beyond) her frustration with lack of representation in rare disease how a lack of curiosity in the healthcare system is causing problems for patients how she’s learned to say “no” why it’s useful to develop a meaningful relationship with your practitioners

    112: Somatic & Spoonie Therapist Rachel Otis Lives with Crohn’s Disease

    Play Episode Listen Later Jan 20, 2021 89:52


    Rachel Otis (she/they) is a somatic therapist, yoga teacher, abolitionist, writer, and pleasure activist who works directly, compassionately and non-judgmentally with the mind-body connection, infusing sessions, groups, retreats, and articles with radical self-love, exploration, and expression. She provides healing pathways of somatically-oriented coping tools and resources including yoga, art, supportive self-touch, guided meditation, joyful movement, vocalizations, exploring imaginational realms, and breathing techniques. They are passionate about creating a more sustainable, socially-just future by infiltrating oppressive systems to create change from the inside-out for ALL bodies. As a Queer womyn with chronic illness (Crohn’s disease), she honors those marginalized identities along with her Micmac indigenous ancestors by constantly working to decolonize and reclaim our connection to our minds and bodies. Rachel has their master’s degree in Counseling Psychology with a concentration in Somatic Psychotherapy from the California Institute of Integral Studies in San Francisco, and works on a sliding-scale, tele-therapy basis to provide accessible sessions to clients worldwide. They also offer: virtual book clubs, live somatics + yoga classes, full and new moon workshops, group therapy, diversity and inclusion trainings, oracle card readings, and will be re-launching their stateside & worldwide Resiliency Retreats once it is safe to do so! Tune in as Rachel shares: that she was diagnosed with Crohn’s disease at age 14 how body image and fatphobia informed her relationship to self from an early age why the transition from pediatric to adult medical care is so rough for patients a discussion of neurogastroenterology, and the brain-gut connection — and what it means to be a young person living with chronic illness and trauma how she connected to somatic therapy as a Spoonie how her identity as queer, indigenous, and fat has influenced her understanding of self AND the way she presents to the outside world — especially in the medical industry that she wrote her grad school thesis on unlearning fatphobia and medical bias that she’s built her entire life and career to be sustainably achievable around her chronic illness that she works virtually and on a sliding scale in order to make her work accessible to those who need her help the most her experiences of discrimination in a disabled body — and how these experiences have been intersectional with what is visible about her identity, especially her body that she is ineligible for stoma surgery what somatic therapy is what it means for her to decolonize her practice as a caregiver why mental health support is so important for anyone living with a chronic illness the importance of pleasure activism, and what it means

    111: P4AD’s Samantha Reid on Patient Advocacy & Life with Crohn’s Disease

    Play Episode Listen Later Jan 13, 2021 84:41


    Samantha Reid is the Digital Director for Patients for Affordable Drugs. Growing up in Illinois, she suffered from a “bad stomach” and weakened immune system, having caught pneumonia nine times by the age of nine. But it wasn’t until she was in her late teens that she sought answers. A diagnosis of Crohn’s disease eventually led her into patient advocacy, where her passion for improving patient quality of life helped her find her way to P4AD. Now an active member of the Spoonie community, she’s also the creator behind the “Sicker Than Your Average” campaign, which was originally designed to help her raise money to cover her own medical bills, and has since expanded to include donations toward racial equity causes. In 2019, she had the once-in-a-lifetime opportunity to testify to Congress, where she told our elected officials that “good health is not a moral virtue, and bad health is not a moral failing.” She has also used her voice to teach us that “if your activism doesn’t include disability justice, it’s not as intersectional as you think it is.” A lover of books, feminism, friends, family, and cats, she’s the millennial we all want to be one day. Join us in welcoming this bright spark to the show! Tune in as Samantha shares: that she was diagnosed with Crohn’s at age 18 that Crohn’s disease can affect any area of the digestive tract, from the mouth to the anus why her relationship with the word “remission” is tricky the importance of boundaries in order to manage her fatigue a discussion about healthcare accessibility and the need for systemic change where improvements need to be made in the working world in terms of accommodating folks with chronic illness and disability her experiences of medical gaslighting how she gets the most out of her doctor’s visits what her work in lowering drug prices means to her why pharmaceutical price gouging is killing Americans that every major country in the world has made it illegal for big pharma to advertise to civilians — except for the US and New Zealand how her diagnosis hinders her work options because of drug pricing and access to insurance that funding for the research behind the development of many of the drugs that pharmaceutical companies charge us for…came from the public that Abbvie makes more on Humira than the profits of ALL NFL teams combined that she testified to Congress in favor of HR3 (which is currently stalled in the Senate, though it passed in the House) that we are living in an interesting time: legislators are beginning to understand that the public is holding them to their word and watching them the vital importance of mental health support for those living with chronic illness and disability

    110: P4AD’s David Mitchell on Drug Pricing and Living with Incurable Cancer

    Play Episode Listen Later Jan 6, 2021 66:29


    David Mitchell has an incurable blood cancer called multiple myeloma. The price of his current drugs is more than $875,000 per year. Like millions of Americans, David needs innovation and new drugs to survive, but he believes drugs don’t work if people can’t afford them. After more than 30 years at a D.C. policy and communications firm, he retired in December 2016 to devote his full energy to helping change policy to lower prescription drug prices. Patients For Affordable Drugs mobilizes patients and allies at the federal and state levels and does not accept funding from any organizations that profit from the development or distribution of prescription drugs. It is one of our favorite organizations, and the only one of its kind on the Hill doing this work without the funding of big pharma. Leveraging the power of patient stories, P4AD works on a bipartisan level to create policy change in favor of reduced drug pricing and eased accessibility to necessary medications and treatments. Their work is remarkable, and we are proud to have their founder on the show! Tune in as David shares: how he was first diagnosed with multiple myeloma after experiencing severe back pain that he’s been on maintenance drugs continuously for the past 10 years — and these drugs are what have kept him alive that at the time of his diagnosis, the median age of survival for his form of cancer was 3-5 years; that has now increased to 8-10 years that myeloma mutates and finds its way around drugs — so when treatments stop working, patients typically pass that he plans to live to 95 and die of something else entirely that the disadvantageous side-effects of his drugs are manageable in comparison to the cancer itself how his wife stepped up as a fearless advocate for him until she herself endured breast cancer and its accompanying treatments (she’s a survivor!), and he stepped up for her his belief that no cancer patient should endure the “acute” stages of diagnosis and treatment alone the importance of looking after his physical and emotional health, and why it’s vital his work be meaningful what P4AD does: how they help patients share their stories and are creating communities among these patients that P4AD not only engages patients, but patients are also among their staff that there is no free market for drugs, and that drug companies have created monopolies to set drug prices and protect those monopolies in whatever way they wish that pharma invents groups akin to P4AD, including Patients Rising and the Alliance for Pharmaceutical Access how insurance and drug companies monopolize pricing and gouge patients where he sees the breakdown of the medical system in the US: that it’s systematically designed without the patient’s access to affordable, comprehensive care in mind an acknowledgement of systemic racism in medicine that he is also a recovering alcoholic — and has been for 30 years

    109: Breath, Movement, and Chronic Pain with TN Advocate Kayla Harley

    Play Episode Listen Later Dec 30, 2020 68:13


    Kayla Harley is a certified GYROKINESISⓇ instructor, Optimal Life Breath Pathologist, doula, and energy healer helping dancers, athletes and everyday movers alike improve their quality of movement: for breath integration and to prevent injury. She is an International Practitioner and among the forerunners in the International Association for Blacks in Dance. She believes firmly that the body has the power to heal itself through active listening and diligent response, and knows this first-hand: as she lives with trigeminal neuralgia, chronic fatigue, and muscle spasticity. Much of her healing has been in the use of holistic methods to manage her own chronic pain and fatigue, and this deep personal work has informed her practice. The work that she does is exploratory and includes Shamanic practices that naturally generate a sense of connection to the divine from the inner-being, outward. Her health and wellness brand, Beebodi, is both a journey of her personal life and testament through healing and naturopathy; as well as a guide to creating a personalized wellness plan and regimen for others. Tune in as Kayla shares: that she was injured during a tour as a dancer — and that this led to all her subsequent health issues that she struggled to be understood by doctors and experienced gaslighting how her race has played into her relationship with the medical industry that she was initially diagnosed with chronic TMJ and eczema before being diagnosed with trigeminal neuralgia (TN) the importance of accepting her chronic pain — from within — in order to find solutions that she’s cycled through every possible medical solution to TN — from epilepsy meds to opioids that she now uses holistic methods to manage her pain: self-hypnosis, breath work, IV vitamins, and reflections on her experience as a doula what her pain feels like: and that it can travel from her face all the way to her chest that she experienced suicidal ideation as a result of her pain that she’s had to teach herself a new way of speaking in order to better manage her pain with mindful facial movement how she taps into her spirituality to find healing: through her religious beliefs and connection to her ancestors other holistic methods she uses for pain management: CBD, cannabis, and massage how the US healthcare system has failed her, and why she looked abroad for inspiration in her healing all about becoming radical about your joy

    108: New Series! Innovators — Part 1

    Play Episode Listen Later Dec 23, 2020 75:21


    Join us as we launch a brand new series on Uninvisible Pod — INNOVATORS! In this series, we will periodically release episodes including short-form interviews with founders whose work is creating waves of change in chronic and invisible illness and disability. First up, as we dive in to the end of the year and look forward into 2021: Yale graduate Celine Tien, founder and CEO of Flowly, a mobile platform for chronic pain and anxiety management; Yael Elish, formerly co-founder and head of product at Waze and now founder of StuffThatWorks, an AI-based crowdsourcing platform where people share information in a structured way about their experiences with a chronic condition, aimed at learning which treatments work best and for whom; and finally, Dave Korsunsky, healthcare entrepreneur and founder of Heads Up Health, a mobile app and web portal that integrates all of a patient’s health records and syncs with pharmacies, clinics, and a wide range of popular health and fitness apps. Like me, you might be reading this and saying, WHOA! I was so blown away by all these individuals and what their services offer the Spoonie community, I wanted to give them an opportunity to share their stories and the importance of their work with you. So: merry happy everything, from me, Celine, Yael, and Dave…to you! Tune in as Celine, Yael, and Dave share: how Flowly offers interactive experiences that teach users to control their nervous system through mobile VR and biofeedback for relaxation training that biofeedback is traditionally difficult to access; and now, it’s fully accessible through Flowly that Flowly is affiliated with University of Pittsburgh and USC to make sure their app is truly efficacious that the work of biofeedback — and Flowly — is in creating new neural pathways how Celine’s upbringing influenced her to create Flowly the goal of StuffThatWorks: to empower patients and medical professionals through the creation of knowledge bases that are automatically analyzed and personalized how the information shared through StuffThatWorks is helping build the world’s largest and most up-to-date database of patient reported outcomes for every chronic condition that within each community on the StuffThatWorks platform, members can see insights about anything from age of onset, to most reported and most indicative symptoms, early symptoms, indicative comorbidities, aggravating factors, treatments, and more how AI crowdsourcing has the potential to fill the gaps in our understanding of medicine that so many clinical guidelines were written decades ago — and StuffThatWorks creates the opportunity to recreate the knowledge base for various chronic conditions en masse why Yael started StuffThatWorks: because her daughter had a chronic condition at a young age how technology has the potential to eliminate bias how Dave was inspired to create his company after his own battle with maladaptive stress syndrome and gut health issues about the potentially life-saving importance of managing and monitoring our own health records that as the doctor/patient relationship becomes increasingly depersonalized and decentralized, it’s vital we track our own medical records to present a full picture to caregivers why data access is empowerment; and that in enabling people to bring their health records together in one place, patients can prevent a misdiagnosis when medical emergencies arise the founding principle of Heads Up Health: that well-organized data holds the key to optimal health

    107: The Point of Pain with Chronicon Founder Nitika Chopra

    Play Episode Listen Later Dec 16, 2020 51:43


    At the age of 10, Nitika Chopra was diagnosed with a debilitating case of psoriasis. By 19, her joints were entirely inflamed and she was further diagnosed with psoriatic arthritis. From the tips of her toes to the crown of her head, her body was covered in unsightly sores…and for the first five years of her second diagnosis, she was unable to move without severe pain. While she’s come a long way since then, the first 15 years of diagnosis and life with chronic illness left Nitika overwhelmed with pain, insecurity, and confusion…and also led to depression. But why does she share so openly about these experiences now? Because: she gets it. She resisted self-care at first, and even overdosed on self-improvement (the concept that something was “broken” and needed “fixing”) in her search for self-acceptance and love. And so she made a clear decision: to commit more to her happiness than to her suffering. With baby steps — long baths, lotions, even a little bit of glamour — she began to feel compassion for her condition, as well as for herself. Her perspective shifted from total despair to the deep faith that there was a better way. And she started to realize that she was meant for something much bigger than a life spent in misery. In 2010, her commitment to natural beauty led her to create the online lifestyle magazine Bella Life. A few years after that, she was hosting her own talk show, Naturally Beautiful. She even landed a position as a luxury skincare spokesperson and regular expert on QVC! But something was still missing. In 2019, she launched The Point of Pain podcast and Chronicon — a highly successful one-day event that finally helped her fulfill her life’s purpose: to bring together Spoonies and their allies in real talk about finding that same love and abundance in their lives that she had spent so long seeking. And, as she shares in this interview, the pandemic changed everything. While it was no longer safe to congregate in large groups, she cleverly pivoted Chronicon to an online community. We’ve been working within the community to keep this vital conversation going, while Nitika has been curating amazing content just for us: Spoonies and our loved ones. From events and guest posts to product discounts and giveaways, she has given us a window into what CAN be for this community; with hope, prosperity, and inspiration round every corner. Help us welcome Nitika back to the show! Tune in as Nitika shares: that she didn’t feel comfortable leading conversation about her chronic illnesses until 2017 how she has grown as a patient advocate — and what this role means to her how she understands “toxic positivity” how she pivoted from Chronicon as an in-person event to an online community, as a result of COVID why the Chronicon Community is about meeting you where you are how to join the Chronicon Community how she showcases community members regularly in the Chronicon Community how Chronicon addresses the decolonization of wellness how she views diversity in advocacy what future events in the Chronicon Community are looking like how her morning routine really helps keep her balanced why it’s important to invest in your relationships why — as Toi Derricote says — joy is an act of resistance

    106: That Chronic Pain Life with The Migraine Diva Jaime Sanders

    Play Episode Listen Later Dec 9, 2020 64:03


    Jaime Sanders’ journey with migraine has been life-long. From a toddler with abdominal migraine to a wife and mother with chronic intractable migraine, Jaime has learned to turn her pain into empowerment. She also manages her daily life with depression and anxiety, surviving two suicide attempts, along with fibromyalgia, carpal tunnel syndrome, spinal stenosis and chronic back pain. Despite these conditions and their limitations, she strives to do her best to find her optimal health. Advocating for headache disorders and mental health are her passions. She is the author of the award-wining blog The Migraine Diva, and was the Migraine Patient Advocacy Coordinator for Global Healthy Living Foundation. Through her work with GHLF, Jaime contributed as a patient reviewer for their First Edition Migraine Patient Guidelines. She is also partnered with the American Migraine Foundation and Shades for Migraine and is a stakeholder with the Coalition for Headache and Migraine Patients and the Headache and Migraine Policy Forum. Jaime is a member of the Society for Women’s Health Research Interdisciplinary Migraine Network and helped to curate their Migraine Patient Toolkit. She also sits on the Patient Leadership Council with the National Headache Foundation. Through her advocacy work and blog, Jaime’s mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions. You can find her written work on Migraine.com, Teva’s Life Effects Program sponsored by Healthline Media, NewLifeOutlook.com, HealthCentral.com, and PracticalPainManagement.com. Tune in as Jaime shares: that she was diagnosed with migraine at eight years old that she has lived in chronic pain since the age of two — in the form of abdominal migraine that her mom also lived with migraine — and as such, she had a shoulder to lean on from the very beginning, as well as someone to learn advocacy from that having support from such a young age was critical to the foundation of her advocacy work how chronic pain is directly connected to mental health — and that she lived with depression from an early age because of her pain that she was diagnosed with fibromyalgia in 2012 that she developed fibromyalgia as a direct result of persistent daily migraines, which had her central nervous system working in overdrive that migraines often have no known cause, and are totally individual to the person who lives with them that she manages her pain with a combination of medications and holistic methods: Botox, nerve blocks, massage, CBD salves, and meditation, among others  that the pain scale is subjective, and her pain is at level 2-5 daily that aside from chronic pain, she also lives with gastric distress symptoms every day — and how the brain-gut connection is so clear when you live with chronic pain conditions how she finds self-worth and confidence in her relationships…and beyond her pain how she minimizes stress to manage her spoons how she tackles the “angry Black woman” and “hysterical” narratives that migraine is so much more than a headache what’s coming up for her: she is the lead writer on a new white paper aiming to address disparities in communities adversely affected by migraine and headache (the incarcerated, immigrants, and BIPOC, among others)

    105: Naturalist Brittany Sumner on Living with Rare Disease Paramyotonia Congenita

    Play Episode Listen Later Dec 2, 2020 62:39


    Born and raised in South Carolina, 27-year-old Brittany Sumner always felt like she was different than her peers — both physically and mentally. At an early age, she began falling over without explanation, finding herself unable to climb stairs, going cross-eyed, experiencing slurred speech, choking on food, and feeling almost constant fatigue. It took some time to find a specialist who truly saw her symptoms as something more, and was finally able to diagnose her with a rare condition called Paramyotonia congenita (PMC). While the diagnosis gave her a sense of relief, it also scared her. What if she couldn't do the things she loved so much? What if she couldn't get a job because of her muscle disorder? Fast forward to her adult life: she is a wildlife biologist, outdoor educator, and conservationist. While she’s currently unemployed because of COVID-19, before the pandemic started she was working as a naturalist — taking students on hikes, teaching them about ecology and the outdoors, and leading conservation and sustainability study-abroad trips for high school students. Her passion is the environment and teaching the next generation about the importance of protecting it. While she’s busy inspiring kids, her students inspire her to get out of bed each morning, too — especially when she is having a bad pain day. In her free time, she loves to kayak, garden, hike, read, and spend time with her new niece! Tune in as Brittany shares: how she realized something was up…her muscles were recovering much more slowly and keeping her behind her peers physically, among other symptoms that she grew up in rural South Carolina, which affected access to the right kind of medical care for her condition that adrenaline makes her condition worse — so a fight-or-flight reaction can be very dangerous for her that the diagnosis was, in part, a relief for her — because it validated her sense that she was living with a condition that was affecting her body that PMC requires genetic testing to confirm — but nobody in her family has the gene mutation. However, there’s a 50% chance she can pass the disorder to her future children that PMC isn’t curable, and that the side-effects of medications she tried actually made her symptoms worse — she she opted out of medication and turned to lifestyle and nutrition that potassium and sodium most directly affect her muscle spasms that figuring out her triggers and symptom management has been a process of trial and error that she only connected to others living with PMC in recent years that the severity of symptoms and response to treatment varies widely from patient to patient her keys to successful movement: water, breaks, and snacks that extreme cold can cause paralysis for her how she’s working on communicating about her condition — especially because it’s invisible how gender has impacted her medical care how awareness is impacted by lack of research funding, and vice versa — where rare diseases often get lost in the shuffle that those living with PMC can’t go under general anesthesia (because of its potassium content) — and she still needs to figure out how to alert emergency care if necessary how she finds solace in nature

    104: Special Needs Siblings Founder Jeniece Dortch

    Play Episode Listen Later Nov 25, 2020 68:56


    Jeniece Dortch is a mom of six, her children ranging in age from 4-16 years. She has a passion for the special needs community that was born when her second-eldest son, Christian Garcia, was diagnosed with autism and epilepsy. She not only saw the need to advocate for these communities, but for the entire family unit (even those who are able-bodied) as inclusive members of the special needs community. With this idea in mind, she formed Special Needs Siblings, Inc. — a nonprofit committed to raising awareness, support and resources for the siblings of disabled individuals. Now a public speaker, writer, and blogger who fights for both the special needs and minority communities, Jeniece has also founded JLQ Marketing, an organization that focuses on helping non-profits grow. She created this company along with her loving husband, Thomas Dortch III (and they were recently married, so send them some extra celebratory love!). Jeniece and Thomas continue this mission to give underserved communities and organizations a voice. Tune in as Jeniece shares: that she knew her son, Christian, had a seizure disorder around age 2, when he had a grand mal that it took more than one doctor to diagnose Christian — and Jeniece was empowered to seek second opinions because her mother is an anesthetist, an “insider” in the medical industry that Christian was diagnosed on the autism spectrum at the age of 3 that Christian is largely non-verbal, but clearly engaged with the world around him why she founded Special Needs Siblings the role of caregiving and the importance of support for siblings and parents of individuals living with disabilities and/or special needs how she’s tackling home school during the pandemic — with 6 kids at home! experiences of discrimination she’s faced in medical and community settings, and how she’s had to stand up for Christian’s needs against pushback what makes a good medical provider what’s next for Special Needs Siblings and for Christian’s care

    103: Advocating Like A Mother: Kelly Cervantes on Life After Epilepsy

    Play Episode Listen Later Nov 18, 2020 52:37


    In May 2016, Kelly Cervantes and her family received two life-changing pieces of news: her husband, Miguel, had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago; and their then-7-months-old baby girl, Adelaide, was diagnosed with epilepsy — and eventually, infantile spasms — a severe form of childhood epilepsy. She transitioned from being the family’s primary bread-winner to a stay-at-home mom and full-time caregiver. Eventually, she found her voice and purpose with the non-profit Citizens United for Research in Epilepsy (CURE), where she is currently a board member. The family hoped that science would catch up to their daughter…but that was not meant to be. Adelaide passed away due to complications of an as-yet-still-unidentified neuro-degenerative disorder…5 days shy of her 4th birthday, and just weeks before Kelly was to receive a WEGO Health Award for her contributions to patient advocacy blogging for Inchstones. In a demonstration of incredible resilience, Kelly made a public promise to her daughter: even though Adelaide’s battle was over, she would continue to fight for families affected by medically-complex disorders. By organizing fundraising campaigns, speaking at epilepsy events across the country, continuing her writing, and hosting CURE’s podcast Seizing Life, she makes sure Adelaide’s struggles were not in vain, and keeps hope alive for all the Adelaides to come. Her hope is that in publicly sharing her family’s journey with epilepsy and the real-life moments that come with parenting and grieving a special needs child, other parents in similar situations will learn they are not alone. Tune in as Kelly shares: how Adelaide was initially diagnosed as an infant that Adelaide’s longest stretch seizure-free was three months long that in 30% of epilepsy patients, seizures are intractable despite intervention that 1 in 26 people will be diagnosed with epilepsy in their lifetime that while certain types of epilepsy can be rare, epilepsy itself is not that there is a lot of stigma attached to the diagnosis — especially for adults why NOT to call an ambulance when you see someone having a seizure that epilepsy is always a symptom of something else: from TBI (traumatic brain injury) to genetics the need for more funding in epilepsy research how she acted as an advocate for her daughter how she learned to speak medical jargon to be taken more seriously by Adelaide’s doctors the importance of mental health support in the grief journey that Adelaide also had MCAS (mast cell activation syndrome) alongside her epilepsy — and her epileptologists often saw these comorbidities occur together why research gives her hope the importance of documenting seizures with video

    102: Angels of Epilepsy Founder Natalie Y. Beavers

    Play Episode Listen Later Nov 18, 2020 42:47


    Natalie Y. Beavers is an award-winning epilepsy survivor, advocate, and founder of the Angels Of Epilepsy Foundation, a non-profit organization that brings awareness, education, and community to epilepsy survivors and their families nationwide. Diagnosed with epilepsy at the age of 5, a seizure while she was driving in 2006 caused a life-changing and tragic car accident. Subsequently, doctors informed her that there was damaged tissue on her left temporal lobe and a cyst on her brain. While two craniotomies have decreased her seizure activity, the cyst remains — so she still experiences seizures from time to time. Her many hospitalizations introduced Natalie to fellow epilepsy survivors and their families, and in 2008 she launched Angels of Epilepsy as a response to the community — to provide deeper support networks and fulfill needs from transportation to medical IDs, among others. Because of her disorder, Natalie continues to experience short-term memory loss — a common side-effect of epilepsy. In a doctor’s appointment in 2013, she couldn’t recall details of recent seizures…so she decided to create and publish The Seizure Diary, which aids those experiencing seizures in tracking their episodes and being able to report back to medical professionals with greater detail and accuracy. Most recently, she has also co-authored Hacking Healthcare with Lauren. What started as a guide to the US healthcare system for the Black community has now become a project with much wider range and significance; an ever-evolving document to provide support and resources to anyone relying on healthcare and finding themselves all at sea. Tune in as Natalie shares: how she was first diagnosed with epilepsy that she’s had periods of seizure inactivity that have enabled her to go off medication that by the age of 28, damaged tissue on her left temporal lobe had expanded — and a surgical implant was suggested in order to remove the tissue safely that the cyst on her brain has never been removed, because its removal could paralyze her that surgery really helped control her seizures, and reduced their severity and occurrence by about 80% how her family has provided her with emotional and practical support why she is a cannabis advocate that meditation has been an effective coping mechanism to control seizure activity when and how she reveals her condition to dates, employers, and the like why she founded Angels of Epilepsy

    101: Breast Cancer Survivor Vatesha Bouler

    Play Episode Listen Later Nov 11, 2020 50:22


    An educator for over 20 years, Vatesha Bouler is a kindergarten teacher and (almost!) six-year breast cancer survivor. Diagnosed at a relatively young age, her experience pushed her to believe that life must be lived to the fullest — and she walks that walk every day in her advocacy work for others enduring similar experiences. A public speaker and author, she is one of the writers of Beyond Her Reflection, wherein she shares her healthcare story. A woman of faith, she also serves on the Cancer Support Ministry at her church, and has found continued love and support not only in her religious community, but also among friends and family who rallied to assist her in her healing. She recently launched the podcast Tesha’s Tea Room, where she interviews prominent survivors and practitioners in the breast cancer community about life during and after diagnosis. Tune in as Vatesha shares: that she was diagnosed with stage 2B breast cancer at 36 that she was referred to a fertility clinic to freeze her eggs before treatment started that she had a lumpectomy because she was negative for the BRCA gene; additionally, she endured chemo and radiation that the most devastating result of her chemo was the loss of her hair that her 6th anniversary is on 11/29 this year how strong she feels having defeated cancer that she will be living with the fear or recurrence for the rest of her life how she’s organized her present and future lifestyle around ongoing prevention the importance of mental health support for life-changing diagnosis and treatment why her health isn’t hers alone — it belongs to a community the importance of Black female voices in breast cancer care why it’s vital we know our family health history

    100: SkinTē Founder Bassmina Mroue Talks Endo & Chronic Pain

    Play Episode Listen Later Nov 4, 2020 37:30


    Bassima Mroue is a Lebanese-American entrepreneur with over a decade’s worth of experience working with heavyweights like Nike and Spanx. As a board member of the Sara Blakely Foundation, she is an active supporter of female empowerment — as she so beautifully demonstrates in her 2012 TEDx Portland talk. Passionate for developing purpose-driven brands, inspiring women, and destigmatizing self-care, Bassima calls upon her diverse professional experience to revolutionize the way we approach beauty and wellness from the inside out…because, as she can attest, the revolution begins WITHIN. Diagnosed with endometriosis and living with chronic back pain and finding herself at odds with traditional healing methods, she turned to naturopathy…where her doctor (and now fellow co-founder) suggested she try ingesting collagen for gut healing and pain management. Bassima struggled to find a tasty way to do so…but also found this approach to be life-changing. And so, SkinTē was born: a “perfectionist formula made with collagen peptides, real brewed tea, super herbs, and fizz.” Ya know…a fun way to get your collagen, day-to-day. Tune in as Bassima shares: that she was diagnosed with stage 4 endometriosis and chronic back pain that she was told for 2 years that her pain was all in her head that she had endometriosis excision surgery — and it was a 5-hour procedure that stress and lifestyle really contributed to her back pain that working with one of her SkinTē co-founders, Dr. Amy Bader, to get on an anti-inflammatory diet helped alleviate numerous symptoms — but she still required surgery how she’s optimized her work-life with her health at the forefront of her mind her experience with pain suppression — and how it took a doctor to advise her to speak up sooner: “Do not wait for the knife to hit your bone” how she has operated in corporate environments to liberate her own story of pain and hormonal imbalance how her illnesses — and Dr. Bader’s patients — inspired them to partner with chef Elizabeth Zieg in creating SkinTē to make collagen ingestion more enjoyable how collagen has aided in her healing — especially her joints and gut (and the data behind collagen ingestion) the importance of functional medicine, and how she has accessed it through Parsley Health how she has learned to see food as medicine

    099: ENDO Black Founder Lauren Kornegay

    Play Episode Listen Later Oct 28, 2020 92:06


    When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. This led her on a search to find someone who looked like her — who was also living with the same diagnosis. Each time, she came up empty-handed. Due to a lack of representation and acknowledgement of Black women affected by endometriosis, she felt entirely alone. She found herself in support groups being dismissed, accused of being racist, or chastised for speaking up about the lack of awareness of anyone who didn’t resemble the primary demographic of the disease (ahem, white women). In 2015, in direct response to these experiences, she created her own community: ENDO Black, a platform designed to connect women of color affected by endometriosis, bringing them together to heal and advocate. Her goal is not only to give women of color living with endometriosis a network, but also to raise awareness among doctors and other medical professionals of the lack of representation in reproductive health research and dialogues…so they can begin to (finally) understand that endometriosis affects women of color differently — from both a medical and cultural perspective. Lauren is also a founding member of the LOLA Collective and has recently become one of the co-founders of the Black Women’s Health Coalition. Tune in as Lauren shares: that her gynecologist first discovered she has a tilted uterus — a common trait often associated with endometriosis that she was diagnosed with endometriosis in 2011 that she manages endo with lifestyle and diet changes, but still lives with chronic pain, nausea, allergies, and brain fog the importance of advocating for oneself when it comes to healthcare why self-advocacy is harder as a Black woman — because of prejudice associated with the trope of the “angry Black woman” how her symptoms have changed over time that endometriosis is a multi-systemic disease how her diagnosis has affected her relationships how she practices self-care why it’s important to be organized when you live with a chronic illness her experience of medical and systemic racism, especially in relation to women’s health why she founded ENDO Black: because she couldn’t find other Black women living with endometriosis about the Black Women’s Health Coalition

    098: Nkem Osian on Uterine Fibroids, IPV, and HIV/AIDS Advocacy

    Play Episode Listen Later Oct 21, 2020 70:09


    Nkem Osian is a Public Health Analyst at the United States Department of Health and Human Services, where she analyzes and monitors Ryan White HIV/AIDS Programs in Los Angeles County. In this role, she ensures the uninsured, underinsured, and vulnerable individuals with HIV have access to optimal, life-saving treatment and care. In addition, Nkem is a patient advocate and member of the board of The White Dress Project (WDP), an organization focused on raising national awareness about the uterine fibroid epidemic and in filling the gaps in care, education, and research in the field. She herself lives with uterine fibroids, and shares her story to help break down the walls of silence that surround this common — and commonly unknown — gynecological condition. Tune in as Nkem shares: that she was first diagnosed with uterine fibroids in 2015 because of excessive bleeding and clots that she normalized her body’s gynecological dysfunction until she was entirely unable to function at all that she developed cardiomegaly (enlarged heart) to compensate for the lack of blood in her body caused by uterine fibroids that she has yet to have fibroid surgery because of (not unreasonable) fears about the process that she has been prescribed various forms of birth control to manage her bleeding that BC is masking her symptoms and not treating the root cause, but she’s been working through her own fears about fibroid surgery her concerns about fertility in relation to the presence of her fibroids that she didn’t know how to effectively advocate for herself until she became a member of The White Dress Project that she felt immense shame about her diagnosis until she made a friend who showed compassion and encouraged her to seek further care (and yes, people who work at HHS can indeed feel timid about their own health!) that based on her research, individuals living with HIV are more likely to be victims of intimate partner violence (IPV)…and those living with intimate partner violence are more likely to contract HIV the importance of community in patient advocacy — and how this work can strengthen our humanity how collective action can make a difference how fibroids have affected her relationships and experiences from whence she draws her strength why your relationship with your healthcare providers should be a partnership in your care

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