AAMDSIF Podcasts for Patients

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"Podcasts for Patients" from the Aplastic Anemia and MDS International Foundation. For more, see our podcast page at: https://www.aamds.org/podcast/

The Aplastic Anemia and MDS International Foundation


    • Feb 13, 2025 LATEST EPISODE
    • monthly NEW EPISODES
    • 16m AVG DURATION
    • 77 EPISODES


    Search for episodes from AAMDSIF Podcasts for Patients with a specific topic:

    Latest episodes from AAMDSIF Podcasts for Patients

    Pediatric Nurse Finds her Way through Aplastic Anemia Treatment

    Play Episode Listen Later Feb 13, 2025 13:34


    Claire was a NICU nurse, so she had never experienced a pattient with Aplastic Anemia. Then, she became a patient herself. Find out how she learned she was stronger than she knew in this episode.

    MDS and Keeping Hope - Donna's Story

    Play Episode Listen Later Jan 27, 2025 26:55


    When Donna picked up a Hope Stone at her first AAMDSIF Patient and Family Conference, she couldn't foresee that she would be carrying it in her pocket on all challenging days. Listen here as Donna shares how she found hope while dealing with MDS, or Myelodysplastic Syndromes. For more content like this, please follow the AAMDSIF Podcast for Patients on Soundcloud, Apple Podcasts, Google Play, Spotify, or the website: https://www.aamds.org/education/podcast-episodes

    Long, Hard, Road to Diagnosis - Shaquilla's Story

    Play Episode Listen Later Jan 21, 2025 19:44


    As an active, working, mom, Shaquilla was used to being busy, and enjoying all the activities that come with children. Then she started getting tired. She wasn't just tired; she couldn't keep up with the daily routine anymore. The visits to the doctor didn't solve the problem. When the diagnosis of PNH finally came, it wasn't any less confusing. Find out how Shaquilla became her own best advocate in her health care, and how she remains resilient in this Podcast for Patients episode.

    Podcast for Patients: In Treatment for PNH - Shane's Story

    Play Episode Listen Later Jan 15, 2025 23:16


    Pain. Blood Clots. Diagnosis. Listen to Shane describe his journey to diagnosis, then to ongoing, successful, treatment in this recent episode. He will inspire you to advocate for yourself, and to keep focused on your needs. To listen to more podcast episodes, please subscribe on Apple Podcasts, Google Play, SoundCloud, Spotify, or listen on the AAMDSIF website here: https://www.aamds.org/education/podcast-episodes.

    FDA Approval of PiaSky for Pediatric Patients with PNH

    Play Episode Listen Later Jul 9, 2024 9:06


    Dr. Satheesh Chonat describes the use of this medication for pediatric patients with PNH, or paroxysmal nocturnal hemoglobinuria. For more podcast episodes like this, please visit aamds.org/podcast (https://www.aamds.org/education/podcast-episodes).

    New Drug Approval for PNH Patients - PiaSky

    Play Episode Listen Later Jul 9, 2024 7:15


    Dr. Carlos De Castro describes the use of this medication for patients with PNH. Listen now. For more podcast episodes like this, please visit aamds.org/podcast-episodes (https://www.aamds.org/education/podcast-episodes)

    Dr. Rory Shallis explains new FDA approval for imetalstat

    Play Episode Listen Later Jun 25, 2024 7:24


    This new therapy is designed for patients with Low-Risk MDS. Dr Shallis explains which patients may see help for their anemia with this treatment as well as manageable side effects.

    Recent FDA Approval of Danicopan for patients with PNH

    Play Episode Listen Later Apr 15, 2024 9:32


    Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria

    Athletic Service Member Conquers Aplastic Anemia and MDS with Transplant

    Play Episode Listen Later Apr 11, 2024 17:59


    Damian describes his story of diagnosis, treatment, and bone marrow transplant in this compelling episode.

    Conquering PRCA: a conversation with Ron Duncan, Patient Survivor

    Play Episode Listen Later Jan 11, 2024 12:28


    Director for Patient Services, Leigh Clark, interviews Ron Duncan about his journey with Pure Red Cell Aphasia, or PRCA.

    Hepatitis-Associated Aplastic Anemia with Dr. Roma Rajput

    Play Episode Listen Later Jan 11, 2024 5:51


    Dr. Roma Rajput explains the origins and treatment of hepatitis-associated Aplastic Anemia in this AAMDSIF Podcast for Patients Episode.

    Brian Anderson Explains Life, Treatment, and Surviving MDS

    Play Episode Listen Later Jan 5, 2024 21:06


    AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his myelodysplastic syndromes, or MDS, patient journey.

    Conversation with patient, Mario Rivera: His Experience with Aplastic Anemia

    Play Episode Listen Later Jan 5, 2024 15:35


    AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey with Aplastic Anemia. The conversation includes treatment and survivorship.

    Athlete's life is turned upside-down by diagnosis of PNH: Evan's story

    Play Episode Listen Later Dec 21, 2023 14:53


    Evan was biking 20 miles each day, when his dad noticed physical changes. The diagnosis: PNH, or paroxysmal nocturnal hemoglobinuria. Listen to Evan describe his journey with this rare disease in this episode of Podcast for Patients.

    Podcast for Patients: Learn about newly approved oral medication for patients with PNH

    Play Episode Listen Later Dec 21, 2023 10:38


    Dr. Bart Scott explains how the approval for the oral medication, Fabhalta, or iptacopan, may be beneficial for particular patients with PNH

    FDA approval of Tibsovo with Dr. Amir Fathi

    Play Episode Listen Later Nov 1, 2023 5:23


    Discussion about recent FDA approval of Tibsovo with Dr. Amir Fathi, who is an associate professor of medicine at Harvard Medical School and the director of the leukemia program at Massachusetts General Hospital.

    Expanded Access to Reblozyl® for Patients with Dr. Guillermo Garcia Manero

    Play Episode Listen Later Oct 2, 2023 12:40


    Dr. Guillermo Garcia Manero explains the new authorization for use of the drug, Reblozyl®.

    Understanding The Americans with Disablities Act

    Play Episode Listen Later Sep 20, 2023 14:08


    Attorney Christopher Mills explains to patients the rights and responsibilities of The Americans with Disabilities Act.

    Living with PNH: The Family Medical Leave Act

    Play Episode Listen Later Sep 19, 2023 11:39


    Learn about your responsibilities and rights under the federal Family Medical Leave Act with attorney, Christopher Mills.

    The Importance of Getting Second Opinion with Dr. Mikkael Sekeres

    Play Episode Listen Later Sep 15, 2023 12:59


    Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. He also shares his own perspective about asking for a second opinion, recommending that patients do select this option. #MDS #aplasticanemia #bonemarrowfailure #bloodcancer

    Managing Chemo Brain With Dr. Jorg Dietrich

    Play Episode Listen Later Dec 20, 2022 11:29


    What is "chemo brain" and how is it managed? Listen to this recording to discover the best approaches to dealing with this common side effect, with Dr. Jorg Dietrich

    Podcast 12-Meningitis and PNH with Dr. Bhumika Patel

    Play Episode Listen Later Dec 19, 2022 8:03


    Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.

    COVID - 19 And Vaccines For Patients - with Dr. Veronica Dioverti Prono

    Play Episode Listen Later Dec 5, 2022 15:21


    When should patients be vaccinated, and with which version? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.

    What is a Clinical Trial? With Olga Rios, RN

    Play Episode Listen Later Nov 21, 2022 7:24


    What is a clinical trial? When should a patient consider participating? Olga Rios, RN, at the NHLBI at the National Institutes of Health, answers these questions.

    Dealing With Fatigue During Treatment With Christina Cline, RN

    Play Episode Listen Later Nov 21, 2022 11:06


    Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue. Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.

    Intermediate Risk MDS With Dr Swapna Thota

    Play Episode Listen Later Nov 17, 2022 14:46


    What is Intermediate-Risk MDS, or Myelodysplastic Syndromes? Learn about this diagnosis with expert Dr. Swapna Thota in this recording.

    Diagnosing MDS with Dr. Joshua Zeidner

    Play Episode Listen Later Nov 9, 2022 11:36


    Dr. Joshua Zeidner explains why it is critical for patients with MDS to receive an accurate diagnosis. He describes the steps to determine the presence of the disease, and also discusses some of the treatments available. #myelodysplasticsyndromes

    Treatments For AML, (Acute Myeloiod Leukemia,) in Older Adults, with Dr Timothy Pardee

    Play Episode Listen Later Nov 8, 2022 20:45


    Dr. Timothy Pardee discusses treatments for AML, or Acute Myeloid Leukemia, occurring in older adults.

    Blood Clots in Patients with PNH, (Paroxysmal Nocturnal Hemoglobinuria) with Dr. Maxim Norkin

    Play Episode Listen Later Nov 8, 2022 9:52


    Dr. Norkin explains why and how patients with PNH can develop blood clots, as well as prevention and treatment.

    Advances in Treating PNH with Dr Allyson Pishko - 2022

    Play Episode Listen Later Nov 2, 2022 11:28


    Treating PNH, or paroxysmal nocturnal hemoglobinuria, continues to evolve. Learn about the latest treatments with Dr. Allysono Pishko here.

    Transplant For Older Adults with Dr. Nandita Khera

    Play Episode Listen Later Nov 2, 2022 7:44


    Older adults may have the option for a bone marrow transplant, depending on a number of factors. Listen to Dr. Nandita Khera here to learn more.

    Treatment Options for MDS with Dr. Rory Shallis

    Play Episode Listen Later Nov 2, 2022 16:45


    Dr. Rory Shallis details treatment options for MDS, or Myelodysplastic Syndromes.

    Hypomenthylating Agents with Dr. Jacqueline Garcia

    Play Episode Listen Later Nov 2, 2022 17:58


    Dr. Jacqueline Garcia describes how hypomethylating agents are used in treatment.

    AAMDSIF Podcast for Patients: MDS - Inqovi Treatment with Dr. Amer Zeidan

    Play Episode Listen Later Aug 10, 2020 17:51


    Dr. Amer Zeidan from Yale School of Medicine explains the uses, benefits, and risks of the newly approved treatment, Inqovi.

    AAMDSIF Podcast Episode 49: Dr. Eunice Wang discusses Secondary MDS

    Play Episode Listen Later May 15, 2020 10:25


    Dr. Eunice Wang explains the origin and treatment of secondary MDS. Dr. Wang is the Chief of the Leukemia Service at Roswell Park Comprehensive Center.

    AAMDSIF SERIES Podcast Episode 48: Dr David Steensma discusses MDS and toxins

    Play Episode Listen Later May 15, 2020 18:51


    Dr. David Steensma discusses MDS and toxins with Leigh Clark, Patient Educator. Dr. Steensma is an associate professor at Harvard Medical School and faculty member in the leukemia program at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, Massachusetts and the Edward P. Evans Chair in MDS at Dana-Farber Cancer Institute

    AAMDSIF Podcast Episode 47: Dr. Yacoub explains MDS-MPNs overlap

    Play Episode Listen Later Apr 17, 2020 20:27


    Dr. Abdulraheem Yacoub talks with Leigh Clark about MDS-MPNs overlap. He includes how molecular testing is used in determining treatment options. He also discusses the newly approved drug, Luspatercept, for the treatment of MDS and MDS-MPN overlap syndromes.

    AAMDSIF Podcast Episode 45: PAN Foundation's grants for patients

    Play Episode Listen Later Apr 13, 2020 14:14


    During COVID-19, the PAN Foundation is giving grants to certain AML and CML patients. Listen to this broadcast to learn the details.

    AAMDSIF Podcast for Patients Episode 46: Luspatercept with Dr. Amit Verma

    Play Episode Listen Later Apr 13, 2020 19:11


    Discussion of the recent approval of Luspatercept with Doctor Amit Verma, Director of the Division of Hematologic Malignancies and a Professor of Oncology at the Albert Einstein College of Medicine in New York City. #MDS #treatingMDS

    AAMDSIF Podcast for Patients Episode 44: Dr. Gustavo Rivero on Low-Risk MDS and Supportive Care

    Play Episode Listen Later Apr 1, 2020 14:36


    Dr. Gustavo Rivero describes strategies for management of Low-Risk MDS, or Myelodysplastic Syndromes. He details supportive care for these patients, including transfusions and iron overload therapies.

    AAMDSIF Podcast Episode 43: Dr. Vu Duong

    Play Episode Listen Later Apr 1, 2020 17:12


    Dr Vu Duong explains risk classifications for MDS. He dives into IPSS and IPSS-R scores, focused on helping patients to understand the meanings of high-risk and low-risk MDS.

    AAMDSIF Podcast Episode 42: Julie Lowe explains March for Marrow and other events

    Play Episode Listen Later Mar 13, 2020 15:12


    Julie Lowe, AAMDSIF Director for Strategic Initiatives, anticipates your questions about getting involved with the Aplastic Anemia and MDS International Foundation in this recent interview.

    AAMDSIF Podcast Episode 41: MDS to AML, treatment and options with Dr. Tiffany Tanaka, UC San Diego

    Play Episode Listen Later Mar 13, 2020 16:04


    Dr. Tiffany Tanaka from the University of California, San Diego explains the development of High-Risk MDS into AML. She talks about new diagnostic and treatment regimens for these patients.

    AAMDSIF Podcast Episode 40: Eliot thrives after transplant and clinical trial for MDS - AML

    Play Episode Listen Later Feb 18, 2020 19:34


    MDS: Eliot shares his journey of diagnosis, treatment, transplant, and clinical trial for MDS with IDH1 and IDH2 mutations and AML. Myelodysplastic Syndromes, Acute Myeloid Leukemia, bone marrow transplant

    AAMDSIF Episode 39

    Play Episode Listen Later Feb 10, 2020 10:50


    Dr. Ehab Atallah describes advances in bone marrow transplant to treat MDS, Myelodysplastic Syndromes, in older patients.

    AAMDSIF Podcast Episode 38

    Play Episode Listen Later Feb 10, 2020 30:15


    Thomas was too young for MDS, typically. His mom, Terri, describes diagnosis, treatment, and survivorship for him here. #myelodysplasticSyndromes #myelodysplasia #BoneMarrowFailure

    AAMDSIF Podcast Episode 37

    Play Episode Listen Later Feb 6, 2020 14:41


    Three generations of MDS, and Leigh Ann is stuck in the middle! Discover not only how she and her son are surviving, but also how far clinical research has advanced since her mother's disease here.

    AAMDSIF Podcast Episode 36

    Play Episode Listen Later Feb 6, 2020 16:26


    Leticia stays active and happy after conquered aplastic anemia was followed by MDS, or Myelodysplastic Syndromes. Discover how she does it here!

    AAMDSIF Podcast Episode 35

    Play Episode Listen Later Dec 6, 2019 33:19


    Why would I choose a clinical trial? What kind of additional care would I receive? How do I know if I qualify? Christina Cline, RN, BSN, CCRC explains both patient and nurse navigator roles in this recent recording.

    AAMDSIF Podcast Episode 34

    Play Episode Listen Later Dec 6, 2019 20:06


    Mark had no symptoms prior to diagnosis. Even more surprising was the "watch and wait" treatment plan! Listen to this recently recorded episode where Mark describes living as an MDS survivor now.

    AAMDSIF Podcast Episode 33 B.Anderson

    Play Episode Listen Later Oct 28, 2019 21:23


    Brian's surprise MDS diagnosis leads to an unsettling strategy: watch and wait! Listen to him describe how he makes the most from the long-term waiting with low-risk MDS in this conversation with AAMDSIF.

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