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 and therapies that were ineffective and in some cases harmful.
When I first went for help with my bladder problems, my family Doctor at that time prescribed me a very strong regimen of antibiotics that were, of course, useless and most probably created antibiotic resistance.
Finally being diagnosed with APBD, meant that I, at last, had an answer to many of the mystery ailments that plagued me: daytime drowsiness, numb toes, sore ankles and calves, and a neurogenic bladder. It’s cold comfort but at least now, I no longer had to waste time with pointless medications and time-wasting visits to specialists.
The APBD Research Foundation has proven to be a valuable resource to find out what current treatments are being investigated and most importantly, it has connected me with other APBD sufferers around the world. Our monthly chat sessions are a great way to exchange treatment tips and to compare disease progress stories.
After my diagnosis, I asked my neurologist if he could suggest any support groups or organizations where I could find out more about APBD. I was surprised to learn that as far as he knew I was the only case in Canada. Thanks to the APBD Research Foundation, I now know that there are other people like me in Canada and of course around the world.
There are no real medications or therapies for my symptoms, but with my doctor’s encouragement, I have pursued an active and organized exercise schedule. Regular cardio activities and light weight training help to relax me and make day to day living more bearable.”
Paul’s story is part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds on Rare Disease Day, February 28, 2019.