2023 Living with hypermobile Ehlers-Danlos syndrome (hEDS) and GI Issues - Harry Radcliffe
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- Опубліковано 10 вер 2024
- Patient-Focused Drug Development Meeting In collaboration with the FDA, October 31, 2023
This presentation covers symptoms including gastroparesis and other GI problems, joints including dislocations, colorectal challenges, bladder challenges, and PoTS.
Harry was diagnosed with EDS at 17. Since then his health has severely deteriorated and subsequently, he has been unable to work, travel, exercise, and rely on a carer and numerous tools to live through the day.
"I am 38, and I am married to my gorgeous wife Sarah. We live in a Hampshire in the UK. I have a degree in Psychology and led a very successful career in Executive Search until EDS took over my life. I was hugely in sports, loved the gym, and was successful in boxing, rugby, football, and cricket - despite the broken bones!
"I was diagnosed with EDS when I was 17 and just under 8 years ago my symptoms appeared further and became far worse following a severe prostate infection. Since then my health has severely deteriorated and subsequently, I have been unable to work, travel, exercise, and rely on a carer and numerous tools to live through the day. I am disabled, have a suprapubic catheter, rely on a liquid diet follow unsuccessful efforts with an NJ tube, and use a mobility scooter in and out of the house. I also have a special toilet, stair lift, and hoist amongst other things."