UPCOMING SESSIONS in ET
Wed, Apr 15, 2026
3:00 – 5:00 PM UTC
Newly Diagnosed ATTR Patients Onboarding Session Dr. Stacey Goodman Click To Register
UPCOMING SESSIONS in ET
Wed, Apr 15, 2026 · 3:00 – 5:00 PM UTC
Newly Diagnosed ATTR Patients Onboarding Session
Dr. Stacey Goodman
Click To Register
View all sessions

Living With hATTR Amyloidosis: CeCe’s Story

Details

For several years, CeCe was living with mysterious health challenges. After seeing numerous specialists and being misdiagnosed multiple times, CeCe finally found out she had hereditary ATTR (hATTR) amyloidosis, a rare, genetic disorder caused by the buildup of an abnormal protein that often affects the heart, nerves, and GI systems. This journey started many years ago, when CeCe was 55.

"I started having carpal tunnel syndrome in both hands," she says. "I would wake up in the middle of the night with extreme pain. The muscles and nerves in my hands and wrists would suddenly start burning and stinging with hot, cutting pain radiating up both arms. The pain was horrible, and I cried many nights."