Ehlers-Danlos Support UK
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hi

hi my name is charlotte I was diagnosed back in April with eds type 3, since then I have been referred to pain management and physio, the doctor who diagnosed didn't give me much information told me what I have and then sent me home and will see my once a year. so now I am confused as to what I do now I haven't have any actual test other than him clinical diagnosing me? and now I feel like I am just left to get on with it, with no support other filling me with painkillers. I am also concerned regarding mu children and I would want to get them tested to see whether they have it or not. I mean I have so many things going on with my body and I feel like I am just getting worse and unsure what to do?

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Welcome on the forum. I was diagnosed with eds 3 about 10 years ago. Sorry you feel you have not got enough information to go on. They did the right thing referring you to physio and pain specialist. My pain clinic has been absolutely amazing in treating me. Hope you have a good experience too.

It might be useful for you to join the eds support uk group. They have lots of info on their website, a help line you can call an organising local support groups so you can meet others

Is your gp supportive?

Hope you get some good replies here! Kind regards x

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Unfortunately at the moment there is no other test to diagnose EDS 3 other than clinical. In fact there is a new classification for EDS and type 3 is now known as hypermobile EDS with a stricter criteria and Hypermobility Spectrum Disorder for those that don't fulfil the tighter criteria.

Because EDS is a problem with the way you make collagen, there is no cure for it, all you can do is manage it. So a pain clinic and physio are the right places to be.

You can get the criteria online from the EDS support website, and apply it yourself to your children (how old are they?) and if they are affected by it then you can ask for them to be diagnosed too. But if they aren't having symptoms that impact on their daily life, there isn't anything to be done other than keeping healthy and making sure that they don't do exercises that might make their joints worse.

It is a very unsatisfying situation, but until they find the underlying genetic mutations that cause hEDS, there are no tests, and the only 'treatment' is to support the symptoms.

I hope that helps a bit.

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Hello Charlotte and welcome,

physio and pain management are pretty much all they offer, unless you have one of the many hundreds of possible complications which accompany hEDS and which need identifying and treating individually. I am not surprised they have not addressed your concerns regarding your children - they never asked if I had one. Depending on age, a reasonably accurate diagnosis may be made (toddlers and young children are often hypermobile but the majority grow out of it).

Genetic counselling is available on the NHS. Although it is a genetic disease, there is no genetic test, but each of your children has a 50% chance of inheriting it - however - there are many levels of the disability. Make an appointment with the same doctor to have any child you have concerns about assessed. You don't give ages but if your children are affected then changes may be required to their school environment. There is a British booklet available to help school teachers understand what accommodations may be needed for a hEDS child here: hypermobilityshop.org/Schoo...

This is a US version: ehlers-danlos.com/wp-conten...

Both are helpful. Any disability is best notified to the school so that the SENCO can ensure the child is given any additional resources/time/support needed to achieve to the fullest extent of his/her ability. You would be entitled to 4 meetings per year with the SENCO (and maybe teacher too) to discuss your child's progress or issues. There is an idea that SENCOs are only for children who are 'behind' - that is not the case. A SENCO's role is to ensure that any child's disability (illness/ailment) does not present any barriers to learning, which means enjoying the fullest experience of school possible. Your child/children may benefit from an Occupational Therapist to visit school to provide guidance and aids to help your child - the usual requirements in class to sit for long periods may be torture to a child with symptoms. I have known a child with this and other problems too, and his life would have been much easier if proper recognition had existed for him.

IMHO the best action to take after sorting out assessment for your kids is to a) educate yourself about hEDS as you will need to be your own expert and advocate, and b) work with your physio to strengthen your muscles so your joints are more stable and your muscles won't spasm and cause pain as much. This website is very useful: edhs.info/home

If you have any questions about anything, you can post here and somebody will most likely have had it.

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Its imperative to see a physio who knows about HSD & EDS.

Otherwise you can be damaged by overloading exercises: my personal experience & much report reading.

Kevin MulDowney has written an excellent protocol on JHS/EDS - available on Amazon

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