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Ehlers-Danlos Support UK
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Do family members have the same condition or are you the first in your family?

Hi does anyone with HEDS diagnosis have another family member with the same thing ? Thank you

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Yep - diagnosed: my sister; hypermobile: cousins, second cousins; dad

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Hi Danlos166

Yes my mother and 2 sister's have this too, my mother was never diagnosed but had had multiple joint issues shoulders, hips and knee and I was told by genetics recently it appears this is where I have got mine from. My sister's have hypermobility and I appear to be the one with more associated issues and suffer the most but I also have Behcet's which does not help differentiate between some of the symptoms with this condition also.

Gillian 🙂

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Thanks everyone most of our family passed away so there is no one to really ask if they also suffered. So guess we will never know.

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Hi

I am adopted, so have no family history. It makes getting a full diagnosis a little more tricky.

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Hi RosiP. Yes it must do we are still waiting for an official one just been told it’s hypermobility so far. my daughter suffers with migraines ibs constant nausea brain fog subluxations all the symptoms really. She has lost a whole year of her life (16) spent 90% in bed. I hope she gets a real diagnosis so maybe she can get some real help as she’s really struggling with coming to terms with everything.

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My family is a bit odd - I don't know most of my mother's side, where it comes from. My mother is hypermobile (and fit at 73 - and can touch her toes etc.) but does not appear to have any bad symptoms. My niece is very hypermobile and has some related issues such as ocd, but is not diagnosed. My brother (who would have to have it in order for my niece to have it) seems just fine. I appear to be a bit of a one off, but it could be that they have a mild variation of it.

Or - they are all three of them very short, tiny petite people - perhaps that is protective? My niece is 4 and a half foot tall, mum is 4' 8", my brother is 5' 4".

I am slightly over average build and average height. Unfortunately, it has not helped me as it is difficult for them to believe I have a genetic condition which nobody else appears to have.

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EDS is a genetic disorder, so it is very likely that others in the family will have a similar condition depending on which variety of EDS you have. Some like hEDS are autosomal dominant which means that you only need one parent to carry the gene for you to get it, but not all kids will have it. It is also possible for each parent to have a different set of genes for EDS too. With hEDS they haven't found the specific genes yet, but it is speculated that there will be some people with a single gene disorder, but others will be polygenic, that is it is a group of genes together that causes the problems. This is why it is so difficult to untangle the genetic aspects of EDS.

So umbrella syndromes like hEDS are said to be cause by single genetic differences that are rare, but collectively cause the same symptoms and are very common.

Oh, and many people in both my own and my husband's families have various different signs and symptoms of EDS. Of course most of them are in denial, 'it can't possibly be from our side of the family, it must be from your father...'

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Thank you everyone for all your replies 😊

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I've been officially diagnosed, as has one of my second cousins, but I am sure that my mother and her mother both had it, as do two of my sisters and at least one of my daughters, probably both. My granddaughter also is clearly hypermobile now, but as she is just two it's still possible that she hasn't got EDS. It's the hypermobility type we have. My niece and her two children are also hypermobile.

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