EDS Awareness Month

[Taei]

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?) I meant to write up a nice long thing about EDS here, but I'll leave that to the professionals. Here are some sites about EDS. If you have any questions about EDS I'll do my best to answer, though. ;D

 

Ehlers-Danlos Syndrome

Wikipedia

Ehlers-Danlos National Foundation

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

ButYouDon'tLookSick.com

[Taei]

A little more information for those who don't follow links. :)

 

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 and 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.

[Celarisa]

Wow!  What a lot of interesting information.  Thanks for making the second post with a summary of what it's all about...I am indeed one of those people who hates clicking on links!  lol

 

So what sort of treatment options are there for someone with your type of EDS?  And have you found a doctor to corroborate your self-diagnosis?  It is incredibly frustrating to be told there is nothing wrong with you, even though you KNOW there is!  You're right...we know our own bodies best!

 

Good luck with this!  I hope it isn't too difficult for you to live with day to day.

[Taei]

Unfortunately the only specialty that can diagnose most forms of EDS is a geneticist and well, money's tight. And even if I could afford a geneticist the Hypermobile type of EDS (which I most likely have) they have not figured out the exact genetic mutation for yet. Basically they'd put all my symptoms together and IF I can find someone versed enough in what EDS is they will probably come to the same conclusion that I already have.

 

As for treatment options, physical therapy, trying not to stress out your body too much and surgery if necessary. That's about it. The main thing about EDS is in preventing the symptoms from getting worse. The main thing that I've been told before by a previous physical therapist is to work on my muscle strength. Basically my muscles have overcompensated for the laxness of my ligaments throughout my life. So strength training for me is the best prevention and treatment I can get. I have also used various braces throughout my life. This last weekend I actually gave in and got a wrist brace for my right wrist. I also have arch supports in my shoes and while they don't fix things they help a lot. My feet go completely flat when I stand on them. I've also got an ankle brace for my right ankle because I had dislocated it in High School and no one believed me at school, but my dad was too cheap so he popped it back into place when we got home. It has never been right since and will randomly give out on me completely. I will probably get another brace for my left wrist when I get paid on Friday as well.

 

As for day to day living, I usually have a varying degree of discomfort just about every day. Some days I have no pain whatsoever, others I've laid in bed crying until I fell asleep. Those were mainly in my teen years when I really didn't know what was going on. Since then I've learned how to cope with the bad days and make adjustments during my day to make things easier. The worst part of it is that doing common everyday activities can sometimes be exhausting. This can often be seen as laziness, especially in children.

 

The main thing with EDS is learning how to cope with it and how to deal with the different things that it throws at you. Some forms aren't so nice, but I can just hope that I'm not that unlucky. Hopefully one day soon I'll have insurance good enough that I can find out from a geneticist what they can actually tell me. Vascular EDS has a much higher mortality rate than any other form because of the fragility of people's organs but they do know the genetic markers for it so it can be more definitively diagnosed.