FAQ - Ehlers-Danlos Syndrome
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Ehlers-Danlos syndrome?

I have been experiencing pains in my joints(elbows, wrists, knees)and i am beggining worry about my situation. My wrists always 'pop' when I roll them out(my doctor said that this is just because of the flexibility in my wrists) and sometimes it feels like i have hyperextended my eblows and the pain is rather awful. I am currently taking boxing and I do not want to give that up at all. I have not been taking vitamins or anything like that yet, but I am going to start right away. Does this sound like Ehlers-Danlos syndrome?

no i dont think so cause poeple with this syndrome have abnormal function of the plateltes inthere blood so they bleed easily ,,  (+ info)

Ehlers-Danlos Syndrome?

I have just been diagnosed with ehlers-danlos syndrome, but they did not really explain it to me that much. It's the one that affects the joints. I am wondering how it affects daily life, anyway to treat it, and why should I get the genetic tests done?

Well, it generally depends on the type you have. I have Ehlers-Danlos Syndrome Hypermobility Type. With me, I am in almost constant pain. How old are you? I'm almost seventeen. Hmm, well it's affects on daily life is mostly with pain. Anyone who doesnt have EDS cant really understand that part of it. On any given day, things can hurt intensely, or you can dislocate any joint. I would suggest getting braces to wear on joints when they dislocate, as they hold them in place well. I have bad times sometimes, periods where I can't walk at all for about 3 weeks at a time. I have a wheelchair for this. Mostly for treatment, you discover what works. If you dont bruise too easily (i do!) then you might want to have deep tissue massages if your back hurts. I do physical therapy, but i would suggest looking for hydrotherapy,where you swim in a heated pool and do weightless exercises. It feels amazing! I'm on different medications for this too, like amitriptilyn. It actually works somewhat well, but the best way to control any type of pain is 800mg of motrin, trust me. It has anti-inflammatory drugs that can relieve joint pain. I'm not especially sure about the genetic testing,but I've had it done too. It's mostly to assess the risk of passing it on to any children you'll have. Also, if you're looking for anyone to talk to, I would suggest joining EDNF.org, where you meet other people who have this disease.
Also, feel free to ask me for my email address or AIM, because i can tell you alot about it if you want to know!
Hope i helped, and I'm sorry that you have to suffer from this as well!  (+ info)

Ehlers Danlos Syndrome?

I have Ehlers Danlos Syndrome it causes me to have weak joints so i cant participate in school sports which i love causes me to be in constant pain and I've analyzed my personaility because i want to be a psychologist and i have realized that it causes me to be very insecure, untrusting, have a need for hugs and affection which causes warmth which helps with the pain, i have also noticed that i try to mask the pain i feel daily simply because i am so insecure and fear what others would think of me it also makes it very hard to think so im keeping about a 80 average at the moment....

this was simply for venting and needing someone to share with :/

You are definitely not alone. I'm not sure how old you are or where you are living, but I am a mother of 2 teenagers and all 3 of us have EDS hypermobile type. My daughter is always looking to chat with other teenagers in the same situation. There is a lot of information out there that can also help, Yahoo Groups has a couple for EDS and there is also the national foundation, ednf.org. Feel free to contact me if you would like some one to talk to.
:)  (+ info)

Ehlers Danlos syndrome?

ok im wondering if i could have it. I have extremely flexible fingers and wrists, i also have stretchy skin, i ask tho cus even tho i have this i run track play tennis and play football, i run fairly fast, and im fairly strong, i also have a good amount of muscle tone which makes me think i don't have it. im 16 yrs old male, 6 foot 1 inches 173lbs and domincan (dark skinned). and incase i do what type of tests would a doctor run to find out.

I'm not sure if you could or not; there are six different types and a pretty broad range of symptoms varying from very mild to life threatening. Extreme flexibility could be a sign of several different things tho I'm pretty sure. Ehlers-danlos can be difficult to diagnose because there aren't like blood tests or anything you can run. If your doctor thinks it's a possibility, you would need to see a specialist who would diagnose you based on your symptoms. However having good muscle tone and being active doesn't mean you don't have it. My boyfriend has it and used to lift weights and was very active but it started to take a toll on his joints and cause alot of pain because of the type he has.  (+ info)

Is it possible to have symptoms from several different types of ehlers-danlos syndrome?

Is it possible for someone with CLASSICAL EHLERS-DANLOS SYNDROME to present most or all of the symptoms from the following types.


Ehlers-Danlos syndrome is a group of rare genetic disorders affecting humans and domestic animals caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. There is no known cure. Treatment is supportive.(Wikipedia)
Ehlers-Danlos syndrome is a hereditary collagen disorder characterized by articular hypermobility, dermal hyperelasticity, and widespread tissue fragility. Diagnosis is clinical. Treatment is supportive.(Merck)
Please see the web pages for more details on Ehlers-Danlos syndrome.  (+ info)

I have just been diagnosed with Ehlers-Danlos syndrome (joint cartilage) should i stop playing sport?

Diagnoses is Ehlers-Danlos Syndrome of thecartilage joint. I am worried although i have played sport most of my life i recently suffered from a dislocated jaw whilst playing soccer which lead to my diagnoses. Is it worth the risk? Are there any other suffers that enjoy sport? And can i make playing sport safer?

The classification you give - of the cartilage joint - is confusing. Were you give a type, such as hypermobility or classical?

If your symptoms are primarily joint related, you might want to consult with a physical therapist to make sure your joints are strong. The PT would also be able to give you exercises to maintain the strength you currently have.

I have played sports my entire life and have EDS, so it is possible. I have to brace my weaker joints and limit both the level of hard physical contact and the amount of time I spend running. Your situation will be different, so pay close attention to any aches or pains - no matter how minor - make changes your body says are necessary and find a doctor or therapist who is willing to work with you so you can stay active.  (+ info)

Who is aware of Ehlers Danlos Syndrome?

This is a connective tissue disorder.There are different types of EDS.
Vascular Ehlers Danlos Syndrome is the most severe type, resulting in early death.
Many people have EDS and are never diagnosed.
A skin biopsy is the way to test for EDS.May was Ehlers Danlos Awareness Month, yet the majority of people have never heard of this disorder.
Tests, information and links are available.

I'm a doctor. I'm aware of Ehlers Danlos Syndrome (EDS). It's due to abnormalities in collagen. You say that "many people have EDS". The overall frequency of the condition in the UK is 1/150,000.

The symptoms of the EDS type 1 can be pretty serious and if you have it you'll probably know. Other EDS types are milder and more difficult to diagnose.

It's good that there is a EDS awareness month, but as with most diseases that are relatively rare, publicity is poor unless there is someone famous to promote it.  (+ info)

Is it too risky for someone with Ehlers-Danlos Syndrome to have a child?

My sister has Ehlers-Danlos syndrome type three, and it is a very severe case... She has always wanted to have children, and I'm wondering if she will ever be able to bear children on her own, or if she would have to adopt, or have me carry the child for her.

my wife has eds iii and we now have a 21day old wonderfully healthy sun. All i would say is seriously consider a c-section due to risk of prolapse and all sorts of nast stuffy if she had a naural birth (my wife had a c-section as highly recommended)  (+ info)

Is Ehlers Danlos syndrome associated with Sarcoidosis?

I would like to know if the two could be associated/related with eachother.
Please and Thank You!

Not that I am aware of ... it is usually considered on the differential diagnosis of a specific subtype of EDS  (+ info)

I am 18 years old and I have Ehlers Danlos Syndrome,What do I need to know to keep my self healthy?

I need to know what I need to do in order to keep myself healthy.
I know exeriseing is one thing. I have a swimming pool so I was going to try swimming,But what else do I need to do?
What is good for me to eat do etc.
I need all the advise i can get!

Ehlers Danlos Syndrome will depend greatly on what classification (type) you have been given. Sounds like yours may be a "type 4," or "vascular."

Usually there are support groups or information on this disease. You're likely seeing a specialist for this kind of matter, so let he/she guide you as to what you SHOULD or SHOULD NOT do.

Best of luck!  (+ info)

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