I thought this might interest a few of you, it certainly explains a lot for me! It is long, and has some medical jargon but worth persevering, take your time if the brain fog is at an all time high today x
Thank you. Really interesting. Is it the proceedings from a conference, and were there other EDS related papers?
Yes I believe it was from a conference. I found it on eds.com, so the American support site. Probably more out there. I thought it was very informative and explained a lot. Now just need gps to do a bit more research if they have a patient with diagnosis or suspicion of eds or hypermobility and lots of seemingly baffling symptoms 😊
GRRRREAT link! I found the same thing several weeks ago while researching my gastro issues. The info in this link has helped me A LOT!
I am a relatively highly complex patient because as well as hEDS i have infant onset Systemic Lupus and several other comorbidities. I have been managing chronic upper & lower GI issues all my life (am 63) via lifestyle management & via NHS investigations + diagnoses + treatments.
2 years ago my chronic lower GI stuff went into a major persistent flare so i was referred to a Pelvic Multidiscipline Team for investigations (urology, gyn, oncology & gastroenterology). Finally last week Gastro clinic explained i have Intestinal Failure, which the medic told me a high proportion of hEDS & HSD patients get, but that researchers & medics do not know the exact cause/s.
Had i not studied the info in your link, i would've been more shocked than i am having learned that medics think i have Intestinal Failure. In truth, i am relieved the nhs recognises my condition is serious. The fact the system is committed to helping me even though our conditions are relatively rare is some comfort. I find increasingly that most medics i encounter do understand the significance of all types of hypermobility (i attend at least 10 different NHS multisystem clinics on a regular basis)
I attend a major international UK University Hospital where i'm under the care of Rheumatology + Immunology + Gyn Onc + Gastroenterology clinics (my other hospital is a smaller local one, where i attend Ophthalmology + Urology clinics). I see medics at my other clinics (ENT, oral surgery, maxiliofscial clinic etc) on an "as required" basis. I am seen regularly at its Gastro Nutrition & Dietetics Clinic. I am also being investigated for Mast Cell Disorder (MCD). I feel as if i am getting a lot of quality help, but i realise i may need to dip into The Bank of Piggy in order to travel to see the well know UK MCD expert in Oxford....and possibly other experts
So, am vvvv glad you posted...i feel the info in your link is very important to many of us. Equally, the wonderful new book on hEDS & HSD by Claire Smith (advertised on the back page of EDS UK's Summer Issue of Fragile Links) has been vvvvv helpful to me: it features excellent info about the gatroenterological manifestations of hEDS & HSD
but there’s no way to prove that .. in the mean time all of a sudden I’m having numbness and tingling...
any ideas? I've wondered if it's worth getting tested but at times the pain is so bad and crippling that...
with any precautions I need to take beforehand. Helpfully, my consultant has discharged me, as there is nothing...
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