We know that patients are the experts when it comes to understanding the impacts of FSHD on their health and well-being. That’s why when we saw many discussions on social media about gastrointestinal and urinary health issues, we initiated a study in collaboration with researchers at the University of Iowa to find out if these issues might be more prevalent in people with FSHD than in the general population. We developed a survey, which many of you answered, and discovered that there is a significantly higher occurrence of these issues among people with FSHD. These data were shared in our October webinar.
This is an important first step toward further research on GI and urinary issues in FSHD. Shorter term, we hope the study will cause health care providers to not brush of their patients’ concerns as being “unrelated to FSHD,” and encourage patients who are experiencing these issues to discuss their issues with their doctors.
Resources
- GI and GU issues in FSHD, poster presentation from 2022 International Research Congress (pdf)
- Our Women on Wellness group compiled some great practical tips for managing “bathroom” challenges. A delicate matter for female travelers with FSHD.
My son, now 42, was diagnosed at age 8 with early onset FSH with hearing loss. He is 42 now, weighs under 100, very frail, just about immobile. He is having trouble controlling bowel movements with sudden diarrhea and pressure pain in his left side (colon area). He has seen regular cadre of Drs. One gastrointestinal Dr is giving him prescriptions of anti-yeast medication, probiotics and a new costly medicine Xifaxan. He will be in diapers and bed. I am very worried about this regime given his non mobility and general weakness. No Drs in Fort Worth know how to deal with this in an FSH patient.
Sincerely,
Maureen Harris(mother) Patrick J Harris