We are excited to announce that Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. This week, Colby is sitting down with Taylor Coffman, who was diagnosed with the rare disease atypical hemolytic uremic syndrome (aHUS) when she was pregnant. The experience caused her to become much more involved with patient advocacy, and today, Taylor helps patients process diagnoses that have major, life-changing impacts.

Check out the episode below:

If you want to save this one for later, you can also listen to the episode at this link.

About Atypical Hemolytic Uremic Syndrome (aHUS)

Atypical hemolytic uremic syndrome is a very rare, progressive, and potentially life threatening illness which is most characterized by the formation of blood clots in many small blood vessels within the body. In at least some cases, atypical hemolytic uremic syndrome is the result of mutations affecting proteins that regulate the complement system, a component of the immune system. The uncontrolled activity of this system is what allows for the disease symptoms to appear, which can include fatigue, swelling, diarrhea, vomiting, abdominal pain, confusion, seizure, coma, kidney failure, heart attack, and stroke. This disease may appear alongside other illnesses as well. Treatment for this disease may include kidney transplant, plasma exchange/infusion, the drug eculizumab, and dialysis. More effective treatments are greatly needed for this illness, as patients have poor outcomes and overall quality of life. To learn more about atypical hemolytic uremic syndrome, click here.

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 a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.