Skip to main content

Ehlers-Danlos Syndrome: A Rare But Painful Disorder


Do you know anyone who is extremely flexible--in the physical sense?  As it turns out, a small number of these individuals actually have a connective tissue disorder.  Known as Ehlers-Danlos syndrome, this inherited disorder of connective tissue results in overly flexible joints and stretchy, fragile skin.  A more severe version of this disorder also affects the walls of the blood vessels.

How does one know this might be a problem? Firstly, the joints are much more flexible than the average person because the connective tissue that holds the joints together is very loose.  Secondly, the skin of affected individuals is very "stretchy...it can be pulled away from the body more than normal, but goes right back into place when released.  The skin is also very fragile, to the point where wounds do not heal well. Those who have the vascular form of this disorder have distinctive facial features( thin nose and upper lip, small earlobes, and prominent eyes), and the heart can be affected as well. They tend to bruise easily and often times their blood vessels are visible through the skin.

There are many possible manifestations or this disorder, such as blood vessels that can easily rupture-but in terms of chronic pain the problems are obvious. Overly flexible joints lend easily to joint dislocations and perhaps arthritis. In addition, the fragility of the skin can lead to problems with wound pain and chronic wound issues.

As mentioned earlier, the cause of Ehlers-Danlos syndrome is genetic.  Genetic counseling may help to reduce the number of afflicted. There is no known cure for the disorder.  Once diagnosed, over the counter pain relievers and avoidance measures are the best hope for maximizing comfort. Blood pressure reducing medications are used in the vascular form to reduce pressure on the vasculature.

This is a lifelong illness- so once diagnosed, it's important to become educated about it as much as possible. Support groups may be of help. It also helps for other people in your life to know and understand your situation so they can accomodate you.



Labels:

Comments

Post a Comment

Popular posts from this blog

Living with Chronic pain hits the big screen!

Been to the movies lately?  Jennifer Aniston is on the big screen in a recent release titled "Cake." Her character, Claire is a victim of chronic pain...she belongs to a support group, where all of the members are coming to terms with the suicide of one of their members.  Of course, she also takes pain medication and addiction is another of her problems...and of course there's more! I guess I am writing this post just to bring readers' attention to the fact that Hollywood has become aware of the crisis that is chronic pain.  This movie is a testament to that. People that don't have to live with this kind of pain don't fully understand the whole story.  Maybe this movie will shed some light on the issues. Here is the official trailer for the movie: Sources: prweb;NorthJersey.com;YouTube
Post a Comment
Read more

The Multimodal Approach to Pain Management

OK..so if you've been following this blog you will notice that there are a good number of ideas to help manage chronic pain.  You might ask yourself, "Which one of these ideas is best for me ?" I would suggest that you might try any number of these things, depending on your level of ability/disability, health care team recommendations, and your personal interests.  There are a number of reasons for doing this: 1) The patient is in control..with few exceptions, it is your decision what to try/not try and how many different things you want to experiment with at any time. 2) Non drug pain management ideas do not have any of the drug interactions or side effects that medications have.  You may have to set limits or modify activity according to personal circumstances, but usually it does not hurt to try any of them. 3)You usually do not need a prescription for most of the ideas I have described.  There are a few exceptions, such as physical therapy.  There ...
Post a Comment
Read more

Beware Of The Tick!

It's tick season, everyone! And while we all know about Lyme Disease and its lingering effects, a new problem has entered the scene. According to the CDC, the Powassan virus is another tick-borne disease that has recently been recognized. The CDC says symptoms become apparent anywhere from one week to one month after infection. Symptoms include vomiting, weakness, confusion, loss of coordination, problems with speech and seizures. Approximately half of those infected by this virus have permanent neurological symptoms, which can include muscle wasting, problems with memory, and recurrent headaches. Many people who have been infected with Powassan virus required hospitalization and sometimes even respiratory support (i.e., a respirator). Treatment is focused on supportive measures. In the meantime, preventive measures are the best way to avoid Lyme disease, Powassan virus , or any other tick-borne virus.  You can read more about preventive measures by clicking here . Sour...
Post a Comment
Read more