#myapbdstory

Current Age: 73 Onset of Symptoms: ~50 Age at Diagnosis: 63 "In 2011 I was diagnosed with a rare genetic disease called Adult Polyglucosan Body Disease (APBD). This diagnosis was made about 13 years after I first experienced symptoms [Read More]

Current Age: 67 Onset of Symptoms: 40's Age at Diagnosis: 60 "I was in my 40’s. The strange problem began with some tingling at the end of one toe. I padded my foot so I could continue the running [Read More]

Robert, in the black shirt, pictured with the Weiss brothers - Michael, Emil, the current president of the APBD Research Foundation, and Gregory, the founder and past president.  Current Age: 63 Onset of Symptoms: 48 Age at Diagnosis: 55 "Nine [Read More]

Current Age: 59 Symptoms onset: 40 “I am APBD patient.  I have known my proper diagnose for 3 years now.  Before they thought that I had Hereditary Motor and Sensory Neuropathy: HMSN type II.  I am the only one [Read More]

Current Age: 60 Symptoms onset: ~40 “At approximately age 40 I started to feel different, I wasn’t sure what it was.  I had some fatigue, some balance issues, but I kind of ignored it.  I had a bad back, [Read More]

Current Age: 63Symptoms onset: 56“What began in 2002 with urinary frequency and peripheral neuropathy has progressed to the point where I may hold the unfortunate title of APBD poster child.  Flash forward six years, worsened bladder woes, massive fatigue, lack [Read More]

Current Age: 54 Onset of Symptoms: 32 Age at Diagnosis: 54 "Like many other APBD patients, I was misdiagnosed for years with ailments that shared symptoms with APBD but were incorrect. These false starts often meant trials of medications [Read More]

Current Age: 67 Onset of Symptoms: ~50 Age at Diagnosis: 66 "As a young girl I was always very clumsy.  I fell often but it seemed to go away as I got older.  I was better able to keep my [Read More]

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 [Read More]

Current Age: 44 Symptoms onset: Early 30s “I would say that my story is a story of perseverance. When I was a small child, around age 2 and a half, my parents were told that I had Glycogen Storage [Read More]

Current Age: 50 Onset of Symptoms: 38 Age at Diagnosis: 44 "It started as a sudden onset of many symptoms at once, I immediately saw my physician, who sent me to a neurologist. I was given a diagnosis of [Read More]