Does anyone have Ehlers-Danlos Syndrome?

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01 Jul 2016, 7:00 pm

I have found a few suggestions of links between Ehlers-Danlos and Autism Spectrum Disorders.

I was just curious if anyone else has it?


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I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


kraftiekortie
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01 Jul 2016, 7:46 pm

I know at least a couple of people here on WP have Ehlers-Danlos.



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01 Jul 2016, 8:02 pm

Oh good, I hope they see this.

I mean, not good they have it.

My 6-year-old NT daughter and I both have it.


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


Pileo
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02 Jul 2016, 4:01 am

Funny a topic like this pops up. My sister was actually just diagnosed and the whole family shows symptoms, including myself. Hyper-mobility, Scoliosis, varicose veins, seemingly weak, soft skin, skin heals badly, etc and from my understanding the gene is dominant. I'm a transman in the midst of planning my top surgery. EDS could have a big impact on what surgery I should go for, because I'm afraid of bad scarring. So I'm going to ask for genetic testing the next time I see my doc. Given from what I've read, it's highly likely I have it, but it's very mild.

"Coincidentally", it's that side of the family that have Aspergers.



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02 Jul 2016, 7:27 am

My *was* mild, but that can change at the drop of a hat.

I'm glad you will be getting testing before your surgery.

Vascular EDS is the one you *really* want to rule out before surgery. Extra scarring would not, but dying would be worse.

Do you have any symptoms of dysautonomia? Over 75% of people with EDS have some form of dysautonomia.

I wish you the best!


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


pigsrock
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12 Feb 2019, 9:57 am

I have Autism and Ehlers Danlos syndrome GO ZEBRAS


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Arganger
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12 Feb 2019, 10:15 am

A couple of days ago I went into my re-evaluation for college, and the doctor suggested that I might have EDS hypermobility type.

I'm going to be getting tested for it.


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Diagnosed autistic level 2, ODD, anxiety, dyspraxic, essential tremors, depression (Doubted), CAPD, hyper mobility syndrome
Suspected; PTSD (Treated, as my counselor did notice), possible PCOS, PMDD, Learning disabilities (Sure of it, unknown what they are), possibly something wrong with immune system (Sick about as much as I'm not) Possible EDS- hyper mobility type (Will be getting tested, suggested by doctor) dysautonomia


AceofPens
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12 Feb 2019, 12:23 pm

It seems like most of the symptoms of EDS-III are also physical traits of autism. I have hypermobile joints, autoimmune issues, problems with a high heart rate, scoliosis, etc, etc. Although I'm sure I'd qualify for a diagnosis of EDS, I don't think it necessary to put a label on everything, especially when it falls under the autism umbrella of symptoms and traits. It's the same reason I've never sought out a diagnosis of ARFID or OCD. Sure, I meet the criteria, but why go chasing after a slew of labels when autism can account for everything on its own? Unless the physical symptoms by themselves constitute a disability, there's just no reason for an additional diagnosis. In my case, my doctor says that my hypermobility would only require surgery if I was physically active - which I'm not, so it's fine. I think that it's silly to try to diagnose problems that aren't problems. Now, if my autoimmune issues ever become as serious as my mom's I might look for a EDS diagnosis, but until then it would be redundant and petty.


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