What do you do if your mother is diagnosed with a rare disease and you’re seeking community? If you’re Mubina Khan Schroeder, you attend the national conference put on by a foundation dedicated to that disease — and pass around a clipboard, inviting people to share their contact information.
This is exactly how Mubina and Sylvia Rupani-Smith met. The two were attending a conference put on by the CurePSP foundation because of their mothers, who were both diagnosed with progressive supranuclear palsy and eventually passed away from complications of the disease. This past summer, they spoke with us at AllStripes, as part of our ongoing content series featuring stories from the rare community.
Because PSP is rare, Sylvia and Mubina explained, their families’ experiences were isolating at times. They were grateful to have found each other.
MUBINA: Having someone that you can just text and say, this is a bad day, it was really, really wonderful.
The two friends also offered profound and practical advice for anyone facing a loved one’s diagnosis with a progressive disease like PSP. To learn more about Sylvia and her mother Betty, and Mubina and her mother Shahjahan, listen in full below. A full transcript is here.
AllStripes’ research programs are open to legally eligible families who want to contribute the medical history of a loved one who has passed away. Contributing records on behalf of a loved one who has passed away can create a meaningful legacy and provide valuable information to improve the lives of patients and their families for generations to come.