A diagnosis, right after a loss
Jennifer is a psychiatric nurse practitioner in New York. She was diagnosed with CMT1A at forty-one, not long after her father died at sixty-five from complications related to the same disease.
I am newly diagnosed at the age of 41. My father passed away at age 65 from complications related to CMT. It has devastated me.
Jennifer DeSetto
Why she started talking about it
Losing him and then being diagnosed herself, in that order, is what pushed her to start speaking publicly about a disease most people have never heard of.
After his death and then my diagnosis it slapped me in the face and I wanted to educate people on this illness.
Jennifer DeSetto
One video did more than she expected. It reached people with CMT across the country, and the thing she got back from it was the thing she had been missing.
I blew up on TikTok with one video and connected with so many people all over the country. It helped me feel so much less alone and I would love to help others feel less alone living with this disease.
Jennifer DeSetto
She brings the rarer combination of clinician and patient to the Dream Team, which matters for a condition where the mental health side of a lifelong diagnosis is so often left out of the appointment.