I am the parent of a 12 year old boy who was diagnosed with Hyper-mobile EDS just over a week ago.
Like so many, we went through years and years of misdiagnosis and labelling. My "favourite" was when he was labelled with "Rumination Syndrome"; a psychological disorder where you make yourself vomit. Luckily, we had a gastroenterologist who knew that this was a physiological condition and that little gem never got off the ground. (This was in Australia, I should add).
For the past few years, I have not been able to let go of the idea that all his problems must be related; no-one can have that much bad luck with separate health issues. Then I discovered EDS and put it to the GP as a possible hypothesis. Luckily, she agreed it was a "good fit" and here we are
My son suffers (and that is the operative word) with gastritis, gastroparesis, migraine, anaphylactic allergies, eosinophilic oesophagitis, POTS and lots of "things" that don't fit any medical boxes.
We have just finished another stint in hospital where he was on IV only for several days as we tried to get the vomiting under control without resorting to an NG tube - the only thing that has worked in the past. Now, he is home - so a great result on the tube front! However, he remains in terrible pain and we just have to wait until his body decides to settle down (while being careful with his diet of course).
Hopefully, groups like this can help raise awareness of this condition and its many manifestations. What we learned on this hospital visit is how little is known about the condition.