Ehlers Danlos Syndrome similarities

Please know that some of these symptoms can also be due to Ehlers Danlos Syndrome, a heritable (genetic) connective tissue malfunction. When joints are hypermobile, when the tissues are lax, the brain is not receiving correct information about where the body is in space.


One can have both, of course. I just want to encourage evaluation for Ehlers Danlos as well as SPD.

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Nov 27, 2016
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EDS and RH negative
by: Carla Andrews

I am 22 years old, I have a baby girl and it seems we have vascular Ehlers Danlos Syndrome. All my life people have stopped and laughed at me because I have large eyes, I am small built and have thin translucent skin. My daughter has the same.

It turns out my unique facial features got me a modelling job and it was all down to EDS. I feel I do suffer with bad anxiety and depression and this may link in somewhere. I am also RH negative blood, which means I have a sixth sense (which I knew) but I recommend anyone who is wanting to be diagnosed for EDS please visit Rheumatologist Dr. Colin Tench in London bridge hospital or Professor Saggar in London. You may want to ask a GP to refer you as they will cost a lot if you go private. Good luck

Sep 18, 2015
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Great Call!
by: Anonymous

I am a Physical Therapist and individuals with low tone, SPD and Ehler Danlos Syndrome have signs and symptoms that are commmon. A genetic specialist may be helpful to rule out EDS.

May 15, 2015
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RH-BLOOD RELATION TO THESE PROBLEMS
by: Anonymous

I appreciate having a place to be heard, most people don't have a clue of all the different symptoms that can go with this. Everybody is a little different. I am sure I have EDS having trouble finding a doctor that knows about this stuff. I think my 37 yr son has inherited parts of this disorder, like pieces of it, which put him in "no man's land" people, and family says "well what't wrong with you?" When I try to explain, you can tell they either don't understand or just don't believe it.In my case I look fine, but in constant pain. My son is dsylexic and ADHD and he is struggling so hard and I just don't know what to do for him. It seems like there is a dark cloud over him. He does make poor choices but then he truly has freak things to happen to him.

He was hyper active as a child and teenager but now he struggles to have any energy.He does not have loose joints but many other symptoms of EDS.
I have studied for yrs with the association of these developmental problems as ADHD, Dyslexia bipolar. This runs very strong in our family.
The study I've found brings me to the conclusion of RH-blood. The three of us girls have this RH-blood and have struggled all thru life especially academically. My brother who is RH+ flew thru school, none of these problems. Even if you are not negative if your mother or father is you can inherit from there. And if you are, it is not JUST the blood, I believe you DNA is different. Please go the RH-blood site, I think you will be surprised with what you find that you can relate to.

May 13, 2015
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EDS and mental problems.
by: Anonymous

I am 16 years old. When I was in 5th grade I was diagnosed with ADHD. Just one year ago I was also diagnosed with EDS type three, from a Rheumatologist is Shriners hospital. Before I was diagnosed with EDS, My doctor saw that I have scoliosis which is very odd considering I am at the end of my growth.

Everyday I have pain in my back, ankles, knees, shoulders etc. I am not sure if I am having a lot of migraines or unusual out of the ordinary (not everyday) symptoms of side effects to taking Ritalin for my ADD. And then I saw a symptom very similar to my EDS syndrome. These two definetly have some sort of connection. My mother has narcolepsy and was misdiagnosed for ADD. Me and my sister are the only ones in my family that are diagnosed with EDS.

For people who doesn't know how to deal with EDS: Everyday me and my sister try to cope with the pain. All a person can do with this syndrome is to get familiar with what makes it worse or better. Cold acts up my syndrome and heat makes it better, on my body. Sometimes if I walk up the stairs my knee hurts and I just have to avoid it sometimes by taking the elevator. For people with a very mild case try working out a lot and gain strength to tighten up. For people who try this but is getting worse or doesn't help then you might have a more server type of EDS.

For people with ADHD: if you have been taking ADHD pills for a long while like everyday, just try to stay normal because after awhile of taking the ADD pill you're brain changes and you feel different. My mother has been on ADHD medications for so long that she has a twitch in her eye and face deformed problems. Btw I think in only a few cases can ADHD be very relatable to EDS because my sister does not have ADHD and has EDS worse then me. Every person if different you can't live based off he said she said. Only you know you're body, don't let a doctor tell you something that makes you unsure of your own body and mind. Unless you are insane and don't know it, then you should listen to the doctor.

Nov 26, 2014
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New Insights into Ehlers-Danlos Syndrome
by: Anonymous

Periventricular Heterotopia: New Insights into Ehlers-Danlos Syndrome : Affected individuals usually have normal intelligence, although some have mild intellectual disability. Difficulty with reading and spelling (dyslexia) has been reported in some people with periventricular heterotopia.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1288408/

Oct 17, 2014
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similarities
by: Anonymous

My son was also recently diagnosed with EDS and was given an earlier diagnosis of dyslexia. I am wondering if his reading fluency problems are really related to collagen issues.

Oct 07, 2011
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EDS and SPD
by: alison

My daughter has eds type 3 (hypermobility type) She is having a lot of problems with processing and memory. Shes been screened at school and they cant find any issues yet she is struggling with all aspects of life relating to her memory. She has a lot of symptoms from the tick list and im at a loss as to where to go from here. Im fighting to be heard and we all see it but the professionals dont. I dont know where to go from here and I was wondering if anyone can offer any advice. Thanks.

Nov 17, 2010
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EDS and SPD/SI???!!!
by: Brynn W.

I am 17 and have EDS. We found out I had EDS about 2 years ago. In 2ed grade I was diagnosed with dyslexia (can you tell from my spelling...sorry.) I never seemed to fit in the dyslexic category and the treatment never helped. I was told i had ADHA. They gave me medicine but it seemed to make things so much worse. I hated the way it made me feel. Growing up I had problems with my senses but thought over time they would go away, but they haven?t yet. I?m convinced I hade SI problems but haven?t received a ?diagnosis.? Almost every thing they say about SI I have! I am so excited im not alone! I think EDS plays a BIG roll in my SI! I am starting to connect the dots to my long list of problems and things are becoming more clear. If you have anything like this PLEASE, PLEASE contact me! EDS and SI must be able to be related!

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