Ehlers-Danlos Support UK
1,531 members489 posts

Hello all

Am so glad this forum is here. I've popped in now & then over the past few years, but not said hello. I'm inspired to post by pam's thread..I like the way she has introduced herself! I'm a bit more longwinded 😜

My ED also seems to come from mother & father, although father seemed more marfanoid (with early onset heart disease, hammer toes, died of rupture AAA in his early 70s). Endometriosis also on father's side. Mother's side: hypothyroid, diabetes, various chronic allergies.

I'm a DES daughter (exposed daily inutero to the notorious artificial oestrogen diethylstilboesterol, born in 1953 in the States, with resulting internal reproductive organ birth defects, endo etc rendering me infertile). As an infant & teen, I was diagnosed with lupus, but my mother kept this secret. At 7 a bad fall from a height onto my head caused concussion & severe damage to cervical spine...and, I suspect, possible chiari of some sort.

my lupus diagnosis was finally recovered 5-6 years ago by a brilliant rheumatologist due to the cumulative debilitation caused by decades without any but emergency systemic treatment. By then I had accumulated a typical collection of diagnosed secondaries, inc sjogrens, simultaneous raynauds & erythromelalgia, lichen sclerosus etc Chronic neuro cerebral symptoms are a particular prob for me, happily responding fairly well to a cocktail of daily immunosuppression meds. Immunology has discovered I also have early onset immunodeficiencies running alongside the infant onset lupus

I have a rather more complicated form of spina bifida occulta, which we think plays a significant part in my complex persistent pattern abdominal & pelvic problems (structural, soft tissue...gyn + irinarurological tract + bowels + neurological etc etc)

My EDH has been a hassle ever since I can remember: all the usual stuff, with especially big feet probs needing bespoke orthotics from an early age (equinus contractus etc) resulting in forefeet bursitis & Mortons neuromas. Also, paroxysmal haematomas in extremities + orally & early onset prolapsed piles leading to full on haemorrhoidectomy in my early 30s.

Am especially interested at the mo in understanding more about my chronic abdomen/peritoneum symptoms

🍀 Coco

PS here is a good link explaining the spectrum of spina bifida occulta issues:

If anyone here is living with SBO, I'd be very glad to meet up

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Barnclown, you are an inspiration to people. Sounds to me that you've never given up, I admire that enormously. Although as yet undiagnosed with EDS, my story is slightly similar to yours. My parents knew I had a disability and got a diagnosis for me but kept that hidden from me and everyone. I too had a fall, mine down a flight of stairs at about 3 yrs of age and was severely concussed. I was not taken to a dr or hospital but was in and out of consciousness for three days.

I have a kyphoscoliosis which causes me problems, subluxation of hips and shoulders, lichen planus of mouth, pernicious anaemia, Hashimoto's thyroiditis and now hypothyroid. Blood problems as I've had two DVTs. Lots of drug and food allergies. Oh, my teeth literally fall out of my head even though I take care of my teeth and see the dentist every three months. Prolapsed womb and bladder, no children. And so the list goes on.

I have huge doubts I'll ever get a confirmed diagnosis as Drs just don't want to know. If anyone can recommend how I can get seen by a rheumatologist in the south east of the U.K. I'd be grateful . My GP surgery ignore my requests for referral.

You've inspired me to get some it off my chest this morning and for that I say a big THANK YOU and to this forum being there and giving me the opportunity.



GOSH: great to meet you mabsie! 👏👏👏 we've really got stuff in common: yikes! thanks for saying those kind things: i can use all the encouragement i can get...especially from experienced campaigners like you

although on the surface, it's hard to see how there could be any fun at all living through all this stuff we put up with (and that's not just the physical & emotional's the strain of constantly having to make the system work for us instead of against us...), my way of coping is to keep my funny bone in the best possible shape so that i can make the most of any good chuckles, laughs & guffaws available: that's the best medicine ever! ironically, i'm also a huge fan of scand noir (i've spent the past 7 years doing what i call my PhD in the scandinavian crime fiction...i've read everything i could get hold of in translation, going right back to the couple who started the genre off in the 1960s....i think i'm drawn to this because the depictions of TRUE DETECTIVES are so brilliant....while so much of my life is dealing with consultants who could be true detectives too if only they were as committed and inspired!)😉

enough rambling

am so glad to be wishing you every possible ounce of good luck with your stuff

🍀 xoxo


Nope , you got it wrong aka coco, I'm a newbie to all of this. I'm the one who's learning! Good to meet you. 'M'😉

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Great to see you on here barncliwn.

Your posts on other forums are so helpful and informative that any input on here will help.

It has been quite quiet on here and think that puts people off posting and as you can see from Pam Mabsie and Tricia posting this place needs waking up a bit to help us Eds and hyper folk to talk,ask and as Mabsie put it getting it off your chest.

You and I know how difficult it can be to live with and the effects of its invisibility to others.

There are so many of us with the multi symptom complex illnesses that we need to become far more visible and Loud!

Ps glad you found the post helpful

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thanks so much for that heads up, effie! 👍👌👏

i'm delighted you're here too and that several of us are introducing ourselves all at once....this really is great! i have been here a bit over the years, and things have seemed very quiet...but not now 💃🎉

i feel the same way about you: your posts on our forums always help and inform + they are brilliantly fun and creative: my favourites!

knowledge is power...solidarity is power!

🍀 XO

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