• By Cynthia Weiss

Sharing Mayo Clinic: Back from the brink and overcoming a rare neurologic disorder

June 27, 2021

In February 2020, as COVID-19 began its spread across the world, Karen Detweiler of DeLand, Florida, and her two adult children, Jonathan Detweiler and Susan Reeve, were facing their own crisis: Karen Detweiler's pending passing from an incurable neurologic disorder.

A retired community college professor and English teacher, Karen started having seizures in the summer of 2019 and quickly deteriorated. During phone calls with Susan, she would talk about her day and describe activities that couldn't possibly have happened, Susan says. Then she started losing her mobility and ability to communicate. By February 2020, she was in a nursing home, receiving hospice care, bound to a wheelchair and speaking only in single syllables.

Doctors had diagnosed Karen with Creutzfeldt-Jakob disease, a rare, incurable neurologic disorder that causes rapidly progressive dementia and has a median survival of less than a year.

"During Christmas, we had had our children down to visit and say goodbye to mom," Jonathan says. "Then, in February, her neurologist wanted to see her. We thought he was interested in her because she had a rare disease. We took her to his office, and he told us she had an abnormal amount of LGI 1 antibody. We asked, 'What does that mean,' and the doctor explained that it meant that mom might have a different disease — not Creutzfeldt-Jakob disease. At that point, Susan decided to call Mayo Clinic."

Read the rest of Karen's story on Sharing Mayo Clinic.