Current Age: 64

Onset of Symptoms: ~57

Age at Diagnosis: ~58

“My life with APBD has changed in countless ways. At home, we have installed an electric stair climber.  I can no longer do my housecleaning.  I can no longer work full-time.  I’m only able to continue working because I am in a loving, supportive environment.  My husband and friends are also loving and supportive.  I was diagnosed at the Mayo Clinic.  I knew to go there because my sister, who had been initially misdiagnosed with MS, ended up going there and was properly diagnosed.  If I had not received my APBD diagnosis, I would have fears about what was going on in my body: walking problems, bladder issues, and cognitive issues.”


Sheila’s story is part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds on Rare Disease Day, February 28, 2019.
Please visit this webpage to learn more and click here to donate.