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Opal’s life with hEDS

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת


My story

Hi, I’m Opal, a young teen living with hypermobile Ehlers-Danlos syndrome(hEDS). When I was 11 I began regurgitating my food after meals, I quickly lost my ability to eat together. I couldn’t keep down food or liquid and was admitted to the hospital. After a week I was diagnosed with adolescent rumination syndrome. I had an NJ tube placed and went on about my life. About 6 months after developing rumination my joints began dislocating and eating was incredibly painful. After lots of testing, I was diagnosed with visceral hyperalgesia. I had a gj tube placed surgically and was put on 24-hour feeds. Around this time, I was diagnosed with PoTs, a type of Dysautonomia. I was constantly passing out and my abdominal pain became unbearable. We continued searching for answers. Eventually, I was diagnosed with hypermobile Ehlers-Danlos syndrome, a genetic disorder that affects collagen. I was then diagnosed with gastroparesis. I am now an ambulatory wheelchair user and completely tube-fed. Before I got sick I was an avid dancer, sadly my body cannot do what it used to anymore. I have taken up crochet and run a successful Etsy shop where I sell my crochet plushies. I use my platform to advocate for other kids with chronic illnesses and help medical professionals understand their patients better.

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