
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.”
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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.