AAMDSIF Podcasts for Patients

Listen to Barry describe the diagnosis, watch-and-wait, treatment, and survivorship for MDS, or Myelodysplastic Syndromes

Learn from Dr. Richard Childs, RADM, as he explains the FDA approval of Omnisirge for treating patients with Severe Aplastic Anemia, or SAA.

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.

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, Spot...

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...

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/educatio...

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).

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)

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. For more podcast episodes, subscribe or click here: https://www.aamds.org/education/podcast-episodes

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

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

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

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

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.

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

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.

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

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.

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

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

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

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

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

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

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.