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AAMDSIF Podcasts for Patients
The Aplastic Anemia and MDS International Foundation
61 episodes
2 hours ago
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.
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Health & Fitness
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All content for AAMDSIF Podcasts for Patients is the property of The Aplastic Anemia and MDS International Foundation and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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.
Show more...
Health & Fitness
Episodes (20/61)
AAMDSIF Podcasts for Patients
Pediatric Nurse Finds her Way through Aplastic Anemia Treatment
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.
Show more...
10 months ago
13 minutes 34 seconds

AAMDSIF Podcasts for Patients
MDS and Keeping Hope - Donna's Story
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
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10 months ago
26 minutes 55 seconds

AAMDSIF Podcasts for Patients
Long, Hard, Road to Diagnosis - Shaquilla's Story
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.
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11 months ago
19 minutes 44 seconds

AAMDSIF Podcasts for Patients
Podcast for Patients: In Treatment for PNH - Shane's Story
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.
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11 months ago
23 minutes 16 seconds

AAMDSIF Podcasts for Patients
FDA Approval of PiaSky for Pediatric Patients with PNH
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).
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1 year ago
9 minutes 6 seconds

AAMDSIF Podcasts for Patients
New Drug Approval for PNH Patients - PiaSky
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)
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1 year ago
7 minutes 15 seconds

AAMDSIF Podcasts for Patients
Dr. Rory Shallis explains new FDA approval for imetelstat
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
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1 year ago
7 minutes 24 seconds

AAMDSIF Podcasts for Patients
Recent FDA Approval of Danicopan for patients with PNH
Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria
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1 year ago
9 minutes 32 seconds

AAMDSIF Podcasts for Patients
Athletic Service Member Conquers Aplastic Anemia and MDS with Transplant
Damian describes his story of diagnosis, treatment, and bone marrow transplant in this compelling episode.
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1 year ago
17 minutes 59 seconds

AAMDSIF Podcasts for Patients
Conquering PRCA: a conversation with Ron Duncan, Patient Survivor
Director for Patient Services, Leigh Clark, interviews Ron Duncan about his journey with Pure Red Cell Aphasia, or PRCA.
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1 year ago
12 minutes 28 seconds

AAMDSIF Podcasts for Patients
Hepatitis-Associated Aplastic Anemia with Dr. Roma Rajput
Dr. Roma Rajput explains the origins and treatment of hepatitis-associated Aplastic Anemia in this AAMDSIF Podcast for Patients Episode.
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1 year ago
5 minutes 51 seconds

AAMDSIF Podcasts for Patients
Brian Anderson Explains Life, Treatment, and Surviving MDS
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.
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1 year ago
21 minutes 6 seconds

AAMDSIF Podcasts for Patients
Conversation with patient, Mario Rivera: His Experience with Aplastic Anemia
AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey with Aplastic Anemia. The conversation includes treatment and survivorship.
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1 year ago
15 minutes 35 seconds

AAMDSIF Podcasts for Patients
Athlete's life is turned upside-down by diagnosis of PNH: Evan's story
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.
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1 year ago
14 minutes 53 seconds

AAMDSIF Podcasts for Patients
Learn about newly approved oral medication for patients with PNH
Dr. Bart Scott explains how the approval for the oral medication, Fabhalta, or iptacopan, may be beneficial for particular patients with PNH
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1 year ago
10 minutes 38 seconds

AAMDSIF Podcasts for Patients
FDA approval of Tibsovo with Dr. Amir Fathi
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.
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2 years ago
5 minutes 23 seconds

AAMDSIF Podcasts for Patients
Expanded Access to Reblozyl® for Patients with Dr. Guillermo Garcia Manero
Dr. Guillermo Garcia Manero explains the new authorization for use of the drug, Reblozyl®.
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2 years ago
12 minutes 40 seconds

AAMDSIF Podcasts for Patients
Understanding The Americans with Disablities Act
Attorney Christopher Mills explains to patients the rights and responsibilities of The Americans with Disabilities Act.
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2 years ago
14 minutes 8 seconds

AAMDSIF Podcasts for Patients
Living with PNH: The Family Medical Leave Act
Learn about your responsibilities and rights under the federal Family Medical Leave Act with attorney, Christopher Mills.
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2 years ago
11 minutes 39 seconds

AAMDSIF Podcasts for Patients
The Importance of Getting Second Opinion with Dr. Mikkael Sekeres
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
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2 years ago
12 minutes 59 seconds

AAMDSIF Podcasts for Patients
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.