#myapbdstory

The following stories are part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds in honor of Rare Disease Day, February 28, 2019.  Our goal is to have at least 28 donations.  Donate now.

Adult polyglucosan body disease (APBD) is a rare, genetic disorder characterized by a deficiency of glycogen-branching enzyme, resulting in the accumulation of polyglucosan bodies in muscle, nerve and various other tissues of the body. Polyglucosan bodies are composed of large, complex, sugar-based molecules. APBD may be characterized by dysfunction of the central and peripheral nervous systems.

David in Maryland

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 [...]

February 26th, 2019|

Chuck in Oregon

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 [...]

February 26th, 2019|

Robert in Florida

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 [...]

February 20th, 2019|

Yvonne in the Netherlands

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 [...]

February 15th, 2019|

Lori in Florida

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, [...]

February 14th, 2019|

Alma in California

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 [...]

February 11th, 2019|

Paul in Calgary

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 [...]

February 4th, 2019|

Kathi in Florida

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 [...]

February 4th, 2019|

Sheila in Minnesota

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 [...]

February 2nd, 2019|

Ronson in Hawaii

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 [...]

January 22nd, 2019|

Andrew in New York

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 [...]

January 4th, 2019|