Ehlers-Danlos?

[bumpysheep]

Just curious... are there any othere here with EDS?

We have family membership with EDNF, but nobody on their boards seems to have a love for the Magic of Disney. Anyone else out there? I realise it's a rare disorder but you never know...

 

[dclfun]

As an O.T. I worked with a few children with E.D. when we lived in New Orleans. Otherwise I've not known anyone with this condition and probably might not be aware of it either. ---Kathy

 

[3kidsmommy]

I am just curious...could you tell what it is? I work with special needs children (and have one myself) and am always interested in learning new things. You never know when it might help! Hope you find some contacts!

 

[bumpysheep]

I am just curious...could you tell what it is? I work with special needs children (and have one myself) and am always interested in learning new things. You never know when it might help! Hope you find some contacts!

It is autosomal dominant genetic connective tissue disorder. There are between 6-10 types. It is rare, but its also underdiagnosed. I think It is related to Stickler and Marfans Syndrome. Most types have a collection skin issues, joint hypermobility, heart problems, spinal problems and gum disease.

For example I'm 24, yet I already have severe gum disease, I bruise easily and have many scars from my skin being so thin. It just spilts open for no real reason. Its a collagen defect. Without my ankle, knee, and wrist braces I constantly sublux and disolocate my joints. I tear ligaments very easily. I have arthritis in almost all of my joints and back. I also have TMJ, despite fullt time splints and permanet bonded retainers I can get my jaw locked just talking. I also have chronic low blood pressure with a resting heart rate of 95-110. I have chronic myofasical pain. And this is all due to the EDS.

My best friend also has EDS and high functioning Autism. While there is no "official" connection it does seem there are a good number of EDS'ers with EDS and Autism or severe ADHD.

On Friday I am speaking at an Autism Conference at UPenn. There are going to be 3 EDS'ers there so I am very curious see see if those others think there is a connection.

I hope my info helped.

The best place to learn more about EDS is at www.ednf.org

 

[Earstou]

I've learned about EDS through my internet support group for Arnold Chiari Malformation. The doctors at the Chiari Institute in NY discovered that something like 30% of their chiari patients also have EDS. They are in the process of publishing this info.
I told my sister I think she has EDS. She had surgery a while ago because her shoulder kept popping out of joint, her knees have both been operated on due to damage from being hyper-extended, plus she's had lots of trouble with scarring from surgeries.

 

[faeflora]

I have EDS type III hypermobility, my mom has it and my grandmother had it.
We love Disney and visit often. I use a wheelchair and leg brace and have hearing loss that they think is connected to EDS.
Happy to see someone else on the boards with the same disability....

 

[bumpysheep]

I have EDS type III hypermobility, my mom has it and my grandmother had it.
We love Disney and visit often. I use a wheelchair and leg brace and have hearing loss that they think is connected to EDS.
Happy to see someone else on the boards with the same disability....

Cool.... well not cool. But I have EDS the classical type. aka EDS I

I know EDS III is the most common type.

 

[mjaynes288]

I have EDS and Asperger's. I am 23 and still walking with AFOs. I really need a power wheelchair but no one will pay for it. I love Disney. I live an hour and a half from DL and have an annual pass so I can go for a few hours at a time.

 

[faeflora]

I am just curious...could you tell what it is? I work with special needs children (and have one myself) and am always interested in learning new things. You never know when it might help! Hope you find some contacts!

For contrast on types of EDS, I have EDS Type III Hypermobility. I have the type where the joints in my body are constantly subluxing and dislocating. My right shoulder rotates 360degrees similar to a corkscrew going into a wine bottle.
I have constant pain and wear a knee brace full time on my right leg. At home I use crutches to walk in public I use a wheelchair full time. I bruise easily but do not have the same scarring issues as the OP. My issues come with the healing process, if a receive a superficial cut like a paper cut it can take up to two months for it to heal completely. I have TMJ and am contantly dislocating my jaw. I also am hard of hearing, the inner ligaments in the ear and the cochlea do not function correctly and my eustacian tubes are stuck in an open position which means that my ability to regulate ear pressure is unavailable to me.
I also have Mitral Valve Prolapse, very low blood pressure, on one recent trip to the ER my blood pressure was 60 over 80. The doctors freaked believe me.
The hardest part about EDS for me is reckognizing that if you strain or hurt a mucsle you never get it fully working again. It is always going to be weaker then when you started.
I also have OCD and Anxiety disorder.

 

[taximomfor4]

My 7yo dd has SID and a host of other things, including hypermobility and hypotonia, and many "syndrome" markers that the dr's just cannot collect into a definitive diagnosis. One of the ones they were looking at is EDS. I don't know if it was ruled out, or what...I just know that I sort of really wish we had a diagnosis, so we could access some of the special organizations out there. Camps, etc. Let alone, the schools would help us more. And we would have some idea what her prognosis is!

Anyway, I read this thread with interest. I really lean toward my dd's actual syndrome probably being Noonan's Turner-like Syndrome but the dr's have given up for a while on diagnosis.

have a great day, everyone.

 

[faeflora]

I totally understand your want for a diagnosis. My mom and dad went through years of doctors without ever finding out what was wrong with me, because of that I received no educational support in college the first time. I was thirty when I finally received my diagnosis, now I am in college again with full educational support services, I also qualified for Social Security Disability because of the diagnosis. It really does help a lot.
Sending you big