Do you struggle to advocate for yourself at your doctor's appointments?
Living with a rare condition like ATTR can be a long road to diagnosis, finding the right treatment, and finding a care team you can open up to.
Have you ever felt judged or dismissed by your doctor?
I definitely agree that they are too proud to admit that they are not familiar with this ailment.
They should refer patients with ATTR to doctors that are knowledgeable in this disease. Is there a source that can provide this information. By State., there are! You can check out - https://arci.org/patients-and-caregivers/treatment-centers-clinical-trials/ (also has info on clinical trials)
https://bit.ly/4w3fPbL
https://bit.ly/4vWusgM
I hope that helps you connect with a knowledgeable provider. Keep us posted on how you are. - Warmly, Donna (Team Member)
I often do, I think the doctors don't know enough about it
