Does anyone here suffer from Ehlers Danilos Syndrome??

[CandyMandyy]

I have another thread, so I hope no one minds me starting this one.

On my other thread, EDS has been mentioned by a few posters and now I’m concerned this could be what has caused my DD’s 3 year battle!

DD started experiencing severe nausea after eating 3 years ago. She had a scope which showed gastritis, osophagitis and that the valve that blocks stomach acid was open. Omeprazole helped massively but didn’t fully deal with the idea. She has had so many tests to try and figure this out but no joy so far. She is trialling medication for delayed gastric emptying and this is the healthiest I have seen her in a long while.

However, I have now read about EDS and she is ticking quite a few boxes. She is hypermobile (undiagnosed, but scored 6 on the test when I checked - she could do the thumb test, pinkie test and the elbow one. Often complains of sore knees & ankles. Her skin is literally velvety soft.

Having read about EDS, some of the more rare ones are really frightening, and I’m worried incase she could have this. 😢 Just looking for advice, reassurance and a hand hold as I’m struggling with my anxiety and have no one to talk to.

i have eds and so does Dd. My issues are mainly joint related but Dd has a lot of digestive issues as well. Nausea, some vomiting, she has a hiatus hernia, she feels she has gastroparesis and struggles to eat but the GP looked at me gone out when I asked if it might be gastroparesis. So she just struggles on.

if your Dd has these issues and scores 6 on the beighton test then she has eds. GPs are supposed to be able to diagnose now, there is a new gp toolkit to help them with this. Ime they still like to send you to see a rheumatologist for a diagnosis but may depend on area. I was diagnosed recently, bit of an anticlimax as rheumatologist just said “you know we can’t cure you, treat you or help you”. Yeah, I knew thanks to the lack of care dd has but at least I have answers for all my joint and tendon issues and widespread pain and tiredness.

99% of the time eds is just hypermobile/connective tissue with no vascular involvement. It’s annoying as anything but I’m not worried about it from that pov. I’m slightly worried about me more long term as I struggle a bit with mobility due to joint issues…..but i don’t think it will kill me.

The eds society is very good www.ehlers-danlos.com

I have it. The main thing for me is to make sure I exercise, including weights, so my muscles are strong enough to support my joints.
I struggle with my skin - I get blisters on my feet when I walk any kind of distance which is problematic, and bruise or scab really easily.
The majority of EDS people have hypermobility type, so try not to send yourself into a frenzy about the other types unless you are told it’s likely.

If you join the UK EDS charity, they'll be able to give you details of your local support group. I find mine immensely helpful and it's so good to talk to people in the same position. You'll be welcome to join as a Parent of someone with suspected EDS, you don't need to be the patient and there doesn't need to be an official diagnosis

https://www.ehlers-danlos.org/

Hi @DanielaDressen - your post says “if your dd has these issues and scores 6 on the Beighton test then she has eds.”

Is that really all that’s required to diagnose it?

Scoring 6 etc means hypermobile
Eds there are specific types diagnosed genetic test.
For hypermobility syndrome hms it s on clinical picture but based on nothing else diagnosed

Sorry more here on hEDS but see also hypermobility syndrome

www.ehlers-danlos.com/heds/

I have ehlers danlos. How old is your daughter? Did anything start of this progression of symptoms?

@beeloubee - she is 11. No, nothing seemed to trigger it, that we are aware of anyway!

My DD is awaiting possible genetic testing for EDS - here they won’t diagnose EDS without testing, just ‘hypermobility syndrome’.

she suffers a lot of pain…

I have it.
I haven't been diagnosed with any digestive problems due to it, but it's there. Mainly heartburn.
I score 8 on the Beighton score, mainly have issues with tendons around my joints. I have a whole list of other things that are worse with eds. pregnancy was the worst for me.

Jeannie di bon has a YouTube channel and blog which is really helpful. She covers a lot on eds.

The scary versions of eds are so rare.

Both my ds & I have hypermobility, ds is worse than me, he has issues with his knees, ankles & hands, he can bend his fingers right back to touch his wrist & has problems writing. We both have super stretchy skin, I was born with dislocated hips & have problems with my ankles, I regularly go over on them, I've dislocated fingers as well.

She needs other symptoms as well as the hypermobility but you did mention gut issues and soft skin so she might have enough. Look at this www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf]]]]

Afaik there’s no genetic test for hypermobility eds, but there is for the other versions of it???

I do keep seeing on the support groups a lot of people who have enough stuff going on for an eds diagnosis as per the criteria but they can’t get a diagnosis, just get told they’re hypermobile.

My DD has hypermobility with v. painful joints - diagnosed by a rheumatologist. I have RA so we were concerned she had that.

Physiotherapy has been helpful.

she does bruise easily and gets motion sickness/nausea a lot - which I guess is related too.

I've eds ! You mentioned that your dd is 11? Things usually ramp up for eds girls around this time due to the onset of puberty.
I've the whole cascade of eds symptoms dislocations, easy bruising , stomach issues , autonomic issues (such as pots) , mcas , balance issues , migraines, reflux , slow transit through the digestive system ect ect .
My main advice for the joint issues is to keep strong , swimming is great as it's non bearing.

I have it as do my teenage kids. You'll need a geneticist to determine which type she may have but they're worth their weight in gold if it's a more rare type. It sounds like jt could be hyper mobile EDS which is the best type to have and that's diagnosed on the absence of other genetic markers for classical or vascular.

Me and DD have it. The main issue for her is her ankles - she goes over on them constantly - and IBS type symptoms that can be quite debilitating. She's now 18, this has all been noticeable since about 8 or 9.
My main issues are bruising and very weak joints. My shoulder, jaw and left hip pop out a lot and my jaw in particular is very painful.

Thanks everyone for your help. I’m sorry to hear so many of you have this and have painful symptoms.

Another symptom my DD has is travel sickness. I didn’t realise that was associated with EDS.

If you haven't already, it would be worth joining some eds uk faceboom groups.