any EDS or HMS parents out there?

[tranquilgardens]

Wondering if anyone out there with similar issues, and wanted to chat?

I have.! I have eds multi type with crossovers. with me the thing that got me diagnosed was my digestive system I have intestinal failure gastropareses , pseudo obstuction and ago IOC bladder along with lots of other bits like pots etc. my main prob was eating and was commonly told I had a eating disorderer they soon found out noting worked and so I was tube fed. I experienced this from 8 but didn't link everything to get her eds wise until I was 17 ( ow 20) I was also told I'd never have children. believe it or not.! BH how do you guys find parenting, I have a brilliant partner/carer who is amazing with his little girl and I don't know how is cope with out hi , so my hat goes off to any single mum edsers ! intact I have a page on Face book called eds awareness fundraising and hope xx

fazerina there eds will not show in blood tests etc, its diagnosed by symptoms and some thing called the beighton scale, which is where they manipulate your joins to see how flexible they are and you get points for different ones and then depending on the points you can be diagnosed, its often diagnosed by geneticists who look at your family history etc as it is a genetic condition. once diagnosed they take 3 pieces of skin normally from your inner arm and send them to labs which can normally tell what type you are and rule out vascular if needed. hope I helped

My dh has HMS, he's not well enough to work at the minute due to it and I'm his carer.

Just wanted to ask, how long did other people's appointments with Dr Prof. Graham take to come through? As dh has been waiting two years now- and last April he was told he's still on the list- they said they might want to see our children (who are all bendy and a couple of them have pain from it) at the same time too. We can't afford to pay privately. He had autonomic testing this year, but he wasn't able to do the tests for POTS (too heavy for the tilt table! He's since lost 2 stone)- so apparently that means he doesn't have it- but they said they want to see him when he's a bit better and can do them .

We're having fun at the minute trying to get our house adapted- we were moved into this property because it can be, but it's a fight. OT's have been hard work, to put it mildly. Most recent thing is that dh doesn't need to have the front door accessible when he's using his chair- which if I'm not in, he'd need, because he falls when he walks. Makes such a difference to him when he uses his chair (energy levels, pain etc)- but the house is impossible to get around as it is. So frustrating trying to get it sorted out.

Hello! I'm already on this board due to my PsA, but just had HMS confirmed too. Where do I go from here, rheum was quite dismissive and more concerned with my arthritis?

Hello. :) Just checking in... I got a diagnosis of HMS last August, after a couple of years of serious problems and a lifetime of bendiness. I also have arthritis in multiple joints - incl. certainly knees, hips, hands and jaw, and probably feet and shoulders too - and can't walk without pain ATM. I'm reeling with how fast my mobility and other abilities have been deteriorating, tbh: five years ago I was dancing salsa, climbing hills and playing 5-a-side football; 2 years ago I was still able to walk a mile or so without thinking; now I struggle to cross the landing to the loo. :(

I struggled to get a dx for a couple of years, with GPs telling me it was all depression or anxiety. When I finally got to see a rheumy, they diagnosed me at once, but because the severity of my arthritis wasn't picked up for a few months, I had physio which made me worse, and actually dislocated my kneecap. :( All medical attention so far has been on my joints - and indeed they are bad - but I have other problems including circulation issues, palpitations, occasional chest pain, and bladder and bowel 'irregularities' that I'd like advice on... I'm back to a (second) rheumy next week, and waiting for an apt with an orthopaedic surgeon...

Fun, isn't it?

Hi again

Just want to let you all know, I'm finding a group called "hypermobility support group uk" to be very helpful on facebook, lots of parents with eds/hms on there :)

I have eds and dysautonomia and 1 baby of my own and 3 step children altho only my little one and stepson live with us full time ATM