Thank you for visiting my Cure Ehlers-Danlos page!

Literally every dollar counts so I appreciate any effort you can make...nothing is too small!The boys and I will be coming up with some other fundraising efforts also to get money on here and the first one will be a penny drive (other change is accepted also if you like)! If you live in the MA area we will be driving around and collecting all the change this summer so start saving! :)

Ehlers-Danlos Syndrome is a cause very close to my heart since I was diagnosed with the Hypermobility type of Ehlers and I deal with dislocating body parts every day, though I am one of the luckier ones and am living my life just fine. Ehlers is a dibilitating syndrome in many patients because your joints become so unstable that each day another body part is dislocating... one day it can be your hips so you can't walk, the next day it can be your shoulders so you can't use your arms,etc. One quick story  that I will share is one that I think is one of my personal craziest. One day I simply handed my son a very lightweight book and a rib in my back popped out and became dislocated. Needless to say I had to go to rush to the doctors and get it put back in because I could hardly breathe. Luckily this rarely happens to me but with others this is a daily occurance. It just goes to show that literally any movement can cause these painful dislocations since there is no collagen in the joint to hold it together.  

The thought of my boys having this syndrome is just too awful for me to not do anything about it (and they each have a 50% chance of inheriting my defected collagen genes in their DNA) so I am dedicating my time to raise awareness of EDS and try to help obtain funds for the Ehlers Danlos National Foundation to get Ehlers researched and hopefully cured.

What exactly is Ehlers-Danlos Syndrome: It is an inhereted connective tissue disorder in which the affected persons collagen genes within their DNA don't work properly and essentially don't make collagen. Everyone needs collagen. It is the glue that holds our joints, ligaments, muscle, etc together. Without collagen in our joints there is nothing to hold our bones in place and essentially they dislocate and cause constant daily pain. There are many other things that are caused by Ehlers also like eye problems, gastrointestional issues, pregnancy issues,chronic fatique, and chronic pain. One form of Ehlers called Vascular Ehlers even affects the blood vessels and is deadly at a young age. There is no cure for Ehlers-Danlos Syndrome and the only thing doctors can do is provide a lifetime of pain management and joint replacement surgeries.

My dream is that some brilliant scientist can figure out a way to make Ehlers patient's produce collagen and/or be able to retain the collagen in our body so that no child will ever have to live with Ehlers pain again!

To Learn more about this terrible syndrome please visit the following link of the Ehlers-Danlos National Foundation (you need to sign up for a free account to view the complete website):  http://www.ednf.org/

If you are on Myspace join my Ehlers page at  www.myspace.com/ehlersdanlosusa

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate even a dollar! Literally every dollar counts!!