Hi, is it possible to have more than one type of Eds?

I have three children , two of whom have numerous symptoms of different types of Eds . We are going to see the GP tomorrow - I am dreading it. Ideally I would like the children to be referred to a consultant with expertise as we have extensive family history of EDS going back three generations also my daughter (14) scored 8/9 on the Beighton scale for hyper mobility . My father 78 has severe Eds symptoms as does my sister 48 yrs . Btw also appears we / they have Von Willebrand disease . I'm worried sick & don't know how to help my children . Please help !

4 Replies

  • Hi I would definitely, definitely ask for a referral to professor Graham's clinic at the UCLA London. It'll take a whole but that is the only place in the UK and they have an amazing network with other departments to look at the whole picture. It sounds complicated and there's a lot of patients there! There's no way a GP will diagnose EDS and even I'd they did, they'd have no idea where to start. Just ask for a referral :) you'll all be fine! :) xxxxx

  • I'm afraid professor grahame is no longer working on the NHS, he retired a while ago, you can still see him privately at St. John and Elizabeth's hospital, uclh hypermobility clinic only see children from 14 ( I believe ) I may be wrong but it's now Hannah Kaz Kaz who has taken over from prof G, If it's genetic testing your after you need vandestine at northwick park hospital and yes it is possible to have more than one type, it's called a crossover :-) good luck

  • You can have a mixture of types with crossover from various symptoms. I have some marfanoid features and POTS. If you have more than 1 type it can be less dislocating for your joints and other organs.

  • EDS runs true to type, so unless you inherit from more than one parent or (rarely) have a sporadic mutation you cannot have more than one type of EDS.

    You can show symptoms that are usually associated with another type but it does not mean you have that type. Some people, including US doctors, have started misleadlingly calling these 'crossover' symptoms causing a lot confusion.

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