Runs in the family: My mother who is no... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Runs in the family

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My mother who is no longer with us , 2 of my children and i almost certainly are eds , hyper mobility patients . None have been diagnosed . And there's the rub . Haven't been able to find a clinic which could help with this . I am 78 so i am just hoping the children could have a name to use . Hopefully getting support at work , with suitable equipment and rest breaks if needed . Only heard of eds a year ago when my daughter interviewed a prospective student who had a diagnosis . A eureka moment . For all of us ! Would be grateful for ideas of where help may be available either near essex or shropshire .janey

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Hi,

We have a family like that. My son was formally diagnosed at age 13. I realised that I had it too, and likely my sister, mother and grandmother. But when I shared this with them they all went into denial.

In fact one of my cousins said no, my son couldn't possibly got the condition from that side of the family, but in the very next sentence of the email she said about how our grandmother had such soft velvety skin, right until the day she died. I hadn't mentioned to her that that was one of the criteria!

Anyway, you might find the RCGP EDS Toolkit really useful. Read through it, then take the URL to your GP to look at. GPs can diagnose using that Toolkit.

rcgp.org.uk/clinical-and-re...

They may say they are too busy, but keep asking them to either suggest another GP at the surgery that will take it up, or refer to someone else.

On the other hand, you may decide that you are confident in you having the condition and don't need a formal diagnosis. For many people they don't need the diagnosis to get services or anything else, and just knowing is good enough.

I went for many years without the diagnoses, my GP was lovely and just assumed I had it too. But he retired and then I started getting 'attitude' from the physios so I went for a formal diagnoses. Sometimes doctors' words count for double, and you need that diagnoses to get physio or other services.

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Yes the formal diagnosis can be critical ...appropriate equipment at work...rest breaks if needed...benefits ...all more accessible with that provenance ...we have 3/4 believers some sceptics...i would think this is probably true in most families ,some people are doubting Thomases . I have just been told that one of my symptoms is most likely imaginary . Wow have i got a fantastic imagination.

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Thanks i will google the tool kit

My family is like that too. I have been officially diagnosed with hypermobility type EDS and so has one of my second cousins on my mother's side of the family. My sisters and I are sure that two of them have it, both of my daughters appear to have it and my granddaughter probably does as well. My great niece and great nephew are also hypermobile and diagnosed as such, though I don't think EDS was mentioned. My sisters and I are sure that our mother had it. I am the oldest of 4 sisters and the one who remembers my mother's mother best, as I was 8 when she died. She's the one who first showed me how to bend my fingers and wrists in ways other people couldn't and she could touch the tip of her nose with the tip of her tongue - clearly she had it too. I only got an official diagnosis about 3 and a half years ago, when my daughter was pregnant and I succeeded in persuading my GP that we needed an official diagnosis. She sent me to the local genetics service, who agreed that I had it, which meant that my daughter, while not officially diagnosed herself, was able to make sure those taking care of her knew that it was likely she had it too. I had actually been diagnosed unofficially some years before by one of my close friends who happened to be an occupational therapist working with several families with EDS and my GP had agreed that I appeared to to fit the criteria.

I don't know how much help that will be. I hope you manage to get a diagnosis!

Regards,

Barbara

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