EDS Awareness Month

[Taei]

I also posted this in The Kin (Org) but hope that it's okay to post it here as well.

 

May is Ehlers-Danlos Syndrome Awareness Month. How do I know this? I most likely have EDS, that's how. (No official diagnosis, but who knows your body better than you, right?

 

A little about EDS. Ehlers-Danlos syndrome is a group of inhereited connective tissue disorders caused by a defect in the synthesis of collagen. Collagen helps tissues to resist deformation (decreases it's elasticity). This can lead to problems in the skin, muscles, ligaments, blood vessels and even some organs. There is no cure for EDS and treatment at the moment is basically supportive. Corrective surgery may help with some of the problems that develop in certain types of EDS. The main form of treatment is to exercie extra caution and to do things to help prevent problems from occuring.

 

There are several different type of EDS in which the symptoms range in severity. Some individuals have negligible symptoms while others are severely restricted in their daily life. EDS is a inherited disorder and it estimated to occur in about 1 in 5,000 births worldwide.

 

The signs and symptoms of EDS can vary widely depending on which type a person has however the most typical symptoms include the following:

Highly flexible fingers and toes

Lose unstable joints that are prone to sprains, dislocations, subluxations (partial dislocations) and hyperextension (double jointedness)

Flat feet

High and narrow palate

Easy brusing

Fragile blood vessels

Velevety-smooth skin which may be stretchy

Abromal wound healing nad scar formation

Low muscle tone and muscle weakenss

Early onset of osteoarthritis

Cardiac effects: Dysautonomia typically accompanied by valvular heart disease

Fibormyalgia symptoms: myalgia nad arthralgia

 

These are only some of the most common effects. People with EDS may have all, some or even none of these symptoms. Most doctors including some specialists are not well versed on EDS and it's complications. Being that such a large percentage of the population has EDS to some degree most people do not know about this disorder. There are only 5 times as many people dignosed with breast cancer as there are those who are born with EDS, yet the general public doesn't even know that EDS exists.

 

Instead parents of children with EDS can be investigated for abuse because of their child getting bruises much quicker than a diagnosis is made. Children can be diagnosed with "growing pains" instead of doctors trying to get to the bottom of their pain. Also many people can live for 20 to 70 years before having a major organ rupture on them and end up needing emergency surgery because of this disease. Considering the implications of not educating the public about this disease I do hope that more people pass the word about what EDS is and how it can be dealt with.

 

I most likely have the Hypermobile type of EDS myself. This means that the ligaments and tendons in my body aren't able to do their jobs because they are overstretched. This leads to problems in varying degrees with all of my joints. I have had dislocated joints, joints that won't function properly, circulation problems, and pain disorder (possibly fibromyalgia). However by exercising and listening to what your body's telling you it can greatly help some symptoms. I have had symptoms of EDS since I was very, very young (5 or possibly even younger) however it was dismissed by pediatricians up into my teens. It wasn't until I started researching on my own once I became an adult that I found a reason for what I was told was all in my head as a kid.

 

I hope that this information is useful to some here or at least that you hold onto the knowledge. Statistically there should be at least two or three people on this board with this disease if not more. Something to think about.

 

If you have any questions about EDS feel free to ask and I'll do my best to answer or to find you an answer. :)

 

Ehlers-Danlos Syndrome

Wikipedia

Ehlers-Danlos National Foundation

Ehlers-Danlos Syndrome Network C.A.R.E.S.

ButYouDon'tLookSick.com

[charis sedai]

Taei, thanks for posting this. I'm hyper-mobile myself, and I have had Physical therapy for it, but I have never even heard about this. Thanks again.

[Taei]

It took me thirteen years from the time I was diagnosed as hypermobile till I knew that EDS even existed. Hypermobile doesn't mean that you have to have EDS, but it quite often is related. 1 out of 4 people are thought to be hypermobile while only 1 out of 5,000 have EDS Hypermobile Type. I found info on EDS because hypermobility didn't cover all of what I knew to be wrong so I kept looking and I finally found information on EDS and it's like a lightbulb went on.

[charis sedai]

I am glad you found out! I don't really think I am much besides Hyper-Mobile- none of the other symptoms fit very well. But regardless, this is excellent information!

[Karasayl]

Thank you for posting this Taei. I had never heard about this condition before, and I appreciate the information.

 

If one feels they have EDS, how does one go about getting checked out considering a large portion of doctors sounds like they dismiss it?

[Taei]

It's all about finding the right person to go to. Many people have approached their general practitioner and asked them for help finding out if they have the disease or not. There are some specialists out there that are familiar with the disease and some regular doctors as well, but finding them can be a trick. Basically the main thing is to keep going to people until you find the right one. It's like with Fibromyalgia, most general practitioners don't know much about it however many rheumatologists have heard of it.

 

If you're in the US the Ehlers-Danlos National Foundation has a physicians directory of doctors that are familiar with EDS and it's complications. You can access the information with a free sign-up but actual membership has yearly fees. It includes doctors from a range of different fields and from all over the country. However I know here, there's nothing that's on their list. They also have local chapters for their members basically as a support group. They would know more about the local area than the website. You could also sign-up on But You Don't Look Sick.com and ask there if anyone knows of a good doctor in your area. There are people on that forum from around the world.

 

I would say to first talk to your regular doctor though, they might have heard of the condition and they might not but maybe they'll be willing to find out what they can about it for you and try to help you in your search for an answer. Some doctors have been known to say no problem and dig right into finding answers others just dismiss it. It has been documented by several well respected groups on the internet one of which is the Mayo Clinic, so hopefully your doctor will take the information and run with it. Other than that, the real way that most people get diagnoses is persistence. They keep pushing the issue until they find out someone who knows what they're doing.

[Millon]

Thank you for this. It was very informational. In retrospect there was an old classmate I had in late grammer school who was under a lot of CPS investigations at my school for a lot bruising and he went to the nurses office often with "growing pains" as we've heard the nurse call it. The reason I bring him up was he was uber-flexible too. His joints were whacked!That was, gods, 18 years ago. I hope he was able to find out about this. Sadly, I can't even remember his name. Jeff or John or something. hmmmm, time to go dig up my old yearbooks haha. Thank you for this.

[Taei]

It's actually a lot more common today to have things like that happen. Rather than looking for a reason for a kid to bruise like that they automatically assume that it's child abuse and that the parents are lying. Parents are often automatically assumed to be guilty and have to prove themselves innocent. I understand that there are parents out there that have no problems lying, but there should be a point where people start to wonder if they're telling the truth or not. I grew up being told that the extreme pain that I felt in my joints was "growing pains" which is the medical equivalent of "We don't know and aren't going to bother to figure it out." and they figured that I was just exaggerating my level of pain. I gave up trying as a kid because I knew that they would either ignore me again or start thinking that I was crazy.