Wednesday, May 10, 2006

Do you know Erhlers Danlos? Read on....

Remember my friend Lynn?

As you know, I love her like I love my own sisters and brother. Lynn has Ehlers Danlos Syndrome (EDS). She sent me an email recently and I thought I'd share some information about this rare syndrome.

It's an f'ed up disorder. This sounds crazy but EDS is so rare that when CSI did an episode that involved EDS the fact that only Grisholm knew about it sort of reiterated that there needed to be more public awareness of it. I'm not sure how cool it is that I think Gill is the measure for how uncommon EDS is...but I'm pretty sure that this episode might be why I love him.

And so, on to the edumacation:

EDS is a "heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue." There are six major types of EDS with varying degrees of severity. EDS is a very rare, and often fatal disorder.

Big words eh? It's scary shit.

"May is National Ehlers Danlos Syndrome (EDS) Awareness Month. Research is still in the informatiom gathering stage and it severely under funded. There is only one facility in North American, located in Seattle Washington, where one can be diagnosed, as I [Lynn] was in 2002.

This was a two year process and I have learned a great deal about this condition since then from my own health setbacks and those of others in this small community."

Research is years away from finding a cure for EDS. In the meantime, much focus has been placed on experimental drug treatment programs and the importance of making major lifestyle adjustments. Funding for research comes from those afflicted and their families. As with anything else, awareness and education are half the battle. To learn more about EDS please click on www.ednf.org"

Feel free to put any questions or comments in the comments - that's what they be there for!

7 comments:

Lily said...

Jen, I love that you love my Mother. Thanks for posting this ♥

Lynn said...

Hey Jen, a big big big thank you and hugs and kisses. And look what my daughter said, isn't she great. Love you lots, Lynn

Jen said...

you guys are great...TAKE IT.

Anonymous said...

My sister has that too--it is freak shit.
Jano

Samantha said...

Thanks for posting this information. It is something I had not heard of before CSI and I'm sure there are a ton of other people out there like me.

Anonymous said...

My son died from EDS Vascular in Feb. He went out to Washington for tests and studies. EDS vascular causes weakness in veins and soft tissues. They fixed the two anuersyms in his illac artery but he developed a bleed within the liver that could not be fixed.I have another son who has it for sure. My three other children have not been tested. I think both other sons have it but not my daughter. My husband died at 48 and until my sons was diagnosed we really didn't know what caused his death. That's one of the rotten parts of this disease. They say it's rare but I think that a lot more people have it and have never been diagnosed. My best wishes go out to you and your family.

Lynn said...

Hi Anonymous, I'm so sorry to hear about your family losses. My heart goes out to you. Care to take this offline and share email addresses?