Sister, You're Not Alone

Dani, at the age of 46 finally recieved her diagnosis of VWD Type 1. After years of struggling with bleeding symptoms, several hospitalizations and traumatic incidents, she was able to put a name and a reason to what had been causing so many of the problems she'd faced over the years. Listen in as she describes her diagnosis story, the impact that it's had on her life and our discussion of physician's failure to recognize the signs of a bleeding disorder. Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Angel grew up knowing she had Factor 1 Deficiency, having been diagnosed at a young age. Overall her symptoms have been mild to moderate, but like many women her journey has been a roller coaster. Listen in as we discuss her treatment journey from Cryoprecipitate to now being on prophylaxis with a factor concentrate, how she contracted Hepatitis C and successfully cleared it, and her experience of finding out she had endometrial cancer. She will always speak for awareness of investigating any unusual female symptoms...as she found out that symptoms and a bleeding disorder aren't always directly linked.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

In today's episode I had the pleasure of speaking with my Hematologist, Dr. Michelle Sholzberg. She is a clinician-scientist with a focus on coagulation, the Division Head of Hematology-Oncology and the Medical Director of the Coagulation Laboratory at St. Michael's Hospital. Listen in as we discuss her current research projects that she is focused on as well as a review and discussion of current treatment options used in those with all types of VWD.  For more information feel free to contact the Comprehensive Hemophilia Care Centre at St. Michael's Hospital in Toronto. https://unityhealth.to/areas-of-care/programs-and-clinics/oncology-and-endoscopy/#st-michaels-hospital-hemophilia-clinic-5   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Nicki had been struggling with ovarian cysts for years, causing her to be in and out of the hospital, leaving her feeling that her issues were being dismissed. Until finally her symptoms and problems led to her diagnosis of VWD Type 1. While her diagnosis was later into her 20's she's felt it has been life changing! Listen in as she tells her story, what led to her diagnosis and the importance of participating in clinical trials to help advance healthcare for women.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

After living the life where she was always told that it was normal to bleed heavy, she finally got her diagnosis at age 24. Listen in as she explains what led to her diagnosis, the impact this has had on her and the life of her family, and our discussion of how having a bleeding disorder affects dating and relationships. Feel free to connect with Lauren through her facebook page https://www.facebook.com/lauren.potier    Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Carly is the mom of a 3 year old little girl diagnosed with VWD Type 3. She lives in the UK and together with her husband, they are raising their 2 daughters. Listen in as Carly shares their family story and discusses everything from diagnosis, discovering family history, to the benefits of moving to prophylaxis and the importance of communication...with your partner, family, and others in the community. Feel free to connect with Carly through her facebook page  https://www.facebook.com/carly.greene.752. And for further information on bleeding disorders be sure to check out the Haemophilia Society in the UK https://haemophilia.org.uk/     Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Elena, a mother of a young girl diagnosed with VWD Type 3 severe has become passionate about spreading awareness and sharing information via social media with others. She and her husband live in Paris, France and their daughter is now one of the youngest patients to be using Hemlibra to help treat her bleeding disorder. Listen in as we discuss the importance of seeking out information, not being afraid to ask and question your healthcare providers, struggling and managing with PTSD, and the benefits of finding community for support.  Be sure to follow @zaichee and feel free to connect with Elena through that page.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Diagnosed with Type 3 von Willebrand Disease as a baby, Michelle has grown up and navigated various life stages with this disorder. Now a mother of 2, listen in as we discuss how Michelle has managed her bleeding disorder sypmtoms from childhood through to pregnancy and delivery. As well as the exciting, new treatment option that she is beginning, and the importance of addressing mental health issues that can stem from dealing with a chronic disorder and medical trauma. Feel free to reach out and connect to Michelle on her instagram page @meesh_igan Here is a great list of resources in the US for further information on bleeding disorders. https://www.hemophilia.org/   httpshttps://hfmich.org/       Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

I met Richelle through Instagram and the page she's created to raise awareness about VWD after the diagnosis of her daughter with Type 3 von Willebrands. Listen in as Richelle shares their family story and discusses topics from diagnosis to ports to the value of social media for finding that community, infomation and support.  Be sure to follow @rallyforrielynn and feel free to connect with Richelle through that page.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Having struggled with debilitating periods for years, listen in as Fabiola shares her story of how she's overcome workplace challenges through self advocacy to allow her to now feel confident and empowered in managing her career and her bleeding disorder! Be sure to follow @vonwillebrandpuertorrican and feel free to connect with Fabiola through that page. And here are the links mentioned in today's episode: Puertorrican Association for Hemophilia and Blood Disorders https://hemofiliapr.org/english/ Helping forward financial assistance program HFA https://www.hemophiliafed.org/home/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-forward/ HFA learning central - Employments Rights Course https://www.hemophiliafed.org/the-institute/   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

8 weeks post op and feeling good! Giving you an update to my hysterectomy journey, an advocacy win, and tips for healing post surgery. Check out this great resource for all stages of hysterectomy support: http://hystersisters.com/   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

Officially diagnosed at age 46 with Hemophilia B, Stormy has become a strong advocate of women with bleeding disorders and is passionate about raising awareness and helping others. Listen in as we discuss her struggles fighting for treatment, the importance of being involved with the community, and the need for more discussion and research on living with a bleeding disorder as we age and move into different life stages.  Be sure to follow @HemoSisterhood on Instagram and feel free to reach out to Stormy through that page.    Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

I was excited to find Samantha's page Hestia Hemo on Instagram, where she shares the stories of women with bleeding disorders. And today, she's sharing her story with us! Listen as we discuss how finding a supportive community can have on so many positive impacts on all aspects of your life. And the important role your HTC plays in your care, no matter the severity of your bleeding disorder. Be sure to follow @HestiaHemo on Instagram.  And learn more about the Kentucky Hemophilia Foundation through the link below.  https://www.kyhemo.org/ Here are the details for the care kits that Samantha uses: Care Kit Items: Wound Seal  Band-Aids Ayr Saline Nasal Gel for nosebleeds  Hand Sanitzer  Nose Bleed Clips https://www.amazon.com/Nosebleeds-Epistaxis-Bleed-Stopper-Treatment/dp/B07D7P4JHC/ref=asc_df_B07D7P4JHC/?tag=hyprod-20&linkCode=df0&hvadid=241871054094&hvpos=&hvnetw=g&hvrand=13164868331202803795&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9014227&hvtargid=pla-571470785463&psc=1  Heating Pad (homemade rice one or a over-the-counter one found in the drug store)    Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

I met Joanna many years ago, having both volunteered for years with the Canadian Hemophilia Society and am excited to share her story with you today! Listen as we discuss the challenges of managing periods as they change over the years, working with your HTC to find the best solutions and the impacts that being a woman with a bleeding disorder can have on your relationships. For more info on bleeding disorders and the Alberta chapter click the link below: https://www.hemophilia.ca/alberta/ Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

The day came this week...my hysterectomy was scheduled and completed. Join me in this episode where I talk about my history and what led me to decide that a hysterectomy was the best option for me. I touch on symptoms, treatment options, collaboration with your healthcare providers, and working through recovery. Check out this great resource for all stages of hysterectomy support: http://hystersisters.com/   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

Diagnosed at 9months of age, Silvana has grown up in the bleeding disorders community. But growing up as a woman of colour with severe VWD has been a challenge. Listen as we disucss issues of mental health, medical trauma, advocacy and the importance of seeking out and connecting with other women in the bleeding disorder community. Be sure to follow and connect with Silvana on her Instagram page @RadishDoodles. And find out more information about Bleeding Disorders at the link below. www.hemophilia.ca Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

From being an obligate carrier, to symptomatic carrier to having mild Hemophilia B...listen to today's episode as we discuss Emiliegh's journey and the issues that surround carrier status and the impact that it can have on women. And be sure to check out the links below to learn more about the Tainted Blood Tragedy as well as the link to the Canadian Hemophilia Society for more info about the organization and different bleeding disorders. https://www.cbc.ca/unspeakable/ https://www.thecanadianencyclopedia.ca/en/article/krever-inquiry www.hemophilia.ca   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

I recently met Addie through social media and was inspired by her unique story. Listen in as we discuss her journey from growing up in Nigeria, not knowing what was wrong or why she was having these bleeding isues, to then getting a diagnosis and recieving treatment when her life took her to the US.    Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

I met Brandee and Nikki through their instagram account @VWDSisterhood. I was so inspired by the way they are spreading awareness and advocating for women with bleeding disorders. We discussed each of their journeys from onset of their symptoms, struggles into adulthood and how they were able to get the care they needed to where they are today and the work they are now doing to help other women. Here is a great list of resources in the US for further information on bleeding disorders. https://www.hemophilia.org/bleeding-disorders-a-z/types/von-willebrand-disease   https://www.hemophiliafed.org/home/understanding-bleeding-disorders/what-is-vwd/   https://www.cdc.gov/ncbddd/vwd/   https://www.cdc.gov/ncbddd/hemophilia/HTC.html   https://www.hemophilia.org/events/bleeding-disorders-conference     Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721

Welcome to the very first episode of Sister, You're Not Alone. Listen in to see why I decided to create this podcast, and give you some details about my history living with a bleeding disorder and how it's affected my life up until now. And why I can't wait to connect and talk to women from all over the world about their experiences too.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721