Calling all those with GSD2 and GSD5
Researchers at the Manchester Metropolitan University are hoping to better understand how problems with bladder control can affect the quality of life of people with neuromuscular conditions, including Pompe (GSD2) and McArdle disease (GSD5).
Here is the rationale for the research
“We are trying to identify whether urinary incontinence and bladder control is an issue in adults with Muscular Dystrophy and wider neuromuscular conditions. Currently the only research on how bladder control may affect the quality of life of someone with Muscular Dystrophy is limited to boys with Duchenne muscular dystrophy, and given that most of these conditions develop in adulthood, we would like to understand how adults are affected. We are looking to recruit as many participants as possible to identify whether there are differences between conditions, sexes, and ages. Ultimately we would like to raise awareness of incontinence in the dystrophies and try to inform what changes are needed in the future regarding interventions and education.”
Take the fully anonymous survey
The research team have developed this totally anonymous survey that should only take 15 minutes to complete:
Feedback welcome, and thanks
If you have any comments on the survey please do feed back to me and I will pass them on anonymously to the parties involved.
Many thanks for your support with this important work.
AGSD-UK Charity Director