Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping those with life-changing diagnoses to process their new reality. Topics Discussed: adapting to a new chronic illness, the intersection of disability and motherhood, learning to be a patient and more.
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Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
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Helping Patients Achieve Their Potential With HAE Junior
Fighting for Access and Awareness With Dreamsickle Kids
An Editor Shares Her Cystic Fibrosis Story
20 Years of Connections: The Glanzmann's Research Foundation
No Day Wasted: The Adam Settle Story
Ilana's New Journey and Ehlers-Danlos Syndrome
Danny's Dose: Prepare for the Worst and Work Toward the Best
Rare Reflections: How Illustrator J.G. Jones is Bringing Attention to MPN Patients Through Art
Rarest of the Rare: Neena Nizar and the Jansen's Foundation
A Disease Advocate Gets Personal About Diagnosis and Treatment Denials
Cushing's Syndrome and Service Dogs: Discussing Disease Advocacy With Amy Dahm
Discussing Diagnosis and Access With the EveryLife Foundation for Rare Diseases
Decentralizing Clinical Trials with Harsha Rajasimha from Jeeva Informatic Systems
Why the healthcare system needs to talk about black health disparities
"I found out I had Huntington's Disease through a letter in the mail" talking about HD, Ostenecrosis, and the future with Antonio Maltese
Meditation's relationship with pain, anxiety, and trying not to be sanctamonious
Putting the pieces back together with Lynzi Russell from the Connecting Families with Urea Cycle Disorder Foundation
Young adults changing rare disease legislation, ft. Dan Pezatta from YARR
When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
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