Is it worth getting a formal diagnosis for Erhlers-Danlos Syndrome?

[carbondated]

Am 99% sure I have this condition and that it runs in the family to minor and more serious degrees. DD pretty sure she has it too. Stretchy, velvety soft skin, slow healing wounds, wide keloid scars, joint hypermobility/dislocations, tendon problems, joint and muscle pains, fatigue, hard nodules under skin round elbows, fatty little lumps on heels and quite a few more rarer symptoms related to bladder, bowels etc.

I am 52 though. Is it worth asking for a referral to a consultant for a formal diagnosis? There is no cure but I have two reasons for wondering whether to ask:

1. So my dd would also have a diagnosis
2. So it's on my records and might allow lots of weird symptoms to be linked together and taken into account if other symptoms show up in the future?

On the down side I would have to declare it on travel insurance forms etc and would get a hefty premium added on.

DD is in her late 20's btw,not a little-un. She is loathe to get a formal diagnosis re health/travel insurance etc.

supposing it's a related disease, like Marfans? If you don't get a formal dx, you may be putting your health at risk in case you have problems with aorta.

I got a formal diagnosis of EDS III last year at the age of 40. I requested a referral after the various gynae surgeons putting me back together after I sustained multiple serious birth injuries when I had DD 2.5 years ago said things like 'well, of course you're hypermobile, which puts you at increased risk of this sort of thing'. After doing a bit more reading, I gathered that all sorts of other things like my IBS, postural hypotension, and Raynauds syndrome are also associated with hypermobility. As daft as it may sound, it hadn't occurred to me that I was hypermobile - as far as I was concerned I was just interestingly bendy and stretchy and the fact that my mother was the same made it 'normal' for me, if you see what I mean?
My reasons for going were firstly simple curiosity, secondly I wanted to know if there were any other health issues I needed to be on the lookout for, and thirdly I wanted to know if I need to be on watch for DD in case she is too. In my case, he felt there weren't any other health issues, and yes he said that DD is at high risk, but she's too young to assess yet. I'm also glad it is on my records - it's meant that when I've been in surgery people have been a bit more careful not to yank me around when I've been under anaesthesia, then put the canula in my arm and not in the back of my hand, things like that. Of course, the most help to would have been to me would have been if I had been diagnosed before I had DD, as that may have pushed people towards ELCS, but it's a bit late for that .
I wasn't aware about having to declare it on health/travel insurance - wouldn't you just state dislocation, your bowel stuff, etc, as those are the actual health complaints you have? Dunno. These people may know whether it is something that has to be declared www.hypermobility.org.
There's a hypermobility thread in children's health - people who post there have given me good advice. Will try and find it....

Found it:
www.mumsnet.com/Talk/special_needs/1493160-EDS-Hypermobility-3?pg=1&reverse=1
People post about adults' stuff there too.
X

Thanks star and cardamom. I will ask the GP for a referral. I've a few health things going on that have been treat separately for years and years, and think they are linked and part of EDS. DD reckons you would need to declare it on insurance applications if you had a formal dx. She said if you dislocated something, needed treatment and then it was discovered later from your records that you had an underlying condition, your claim could be void? I can't say it occurred to me before she said this though.

I had mega problems throughout pregnancy, birth years ago. Think they were part of same thing. I think you're right that if you have a proper diagnosis, you are less likely to be hurled around if you are under GA and people know to keep an eye on your heart etc.

Thanks for the link. Will go check that out.