For those of you who are new to my blog or have never heard of Ehlers Danlos Syndrome here is an explanation:
EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, particularly the hypermobility type. The loose joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. People with vascular type EDS are at risk of serious complications. Serious complications include tearing (rupture) of major blood vessels and organs. These complications can be fatal. About 1 in 4 people with vascular type EDS develop a serious health problem by age 20, and more than 80 percent develop a life threatening complication by age 40. The median age of death is 48 years.
There are a number of secondary conditions connected to EDS that can be very disabling as well- Some of the more common disorders are POTS, mitral valve prolapse, orthostatic hypotension, IBS, asthma, dysautonomia, and chiari malformation.
So You Think You Might Have EDS- very informative article about the symptoms and signs of EDS
*This article should not replace the advice of a medical professional. If you think you might have EDS please consider seeing a genetic specialist.
1. Post the following text (or your own version) to your facebook or twitter page:
"May is Ehlers Danlos Syndrome Awareness month. EDS is a rare connective tissue disorder marked by hypermobile and unstable joints, fragile blood vessels and organs, and even heart complications. There is no cure or specialized treatment. Most doctors don't know what EDS is. Help spread awareness and education. Post this if you have or know someone living with EDS. With awareness and research there can be a cure."
2. Download and/or post the following EDS posters to your facebook or twitter page. Ask your doctor, physical therapist and/or hospital if you can post them in their lobbies or waiting rooms. Check with other local businesses. Ask permission before posting. *If you are interested in larger poster size versions for distribution please contact EDS Network Cares (click here)
(Property of EDSNC)
(Property of EDSNC)
(Property of EDSNC)
(Property of EDSNC)
3. Fundraising! Donate to EDSNC (Ehlers Danlos Syndrome Network C.A.R.E.S). There are two research projects currently underway--any money donated to the cause is extremely helpful (click here for an EDSNC template for donations). If you are interested in purchasing awareness bracelets through EDSNC click here! Donations are also accepted through EDSNF (Ehlers Danlos Syndrome National Foundation)!
4. Be creative!
-Create an "Ask me about EDS" shirt or badge!
-Hold a bake sale with the proceeds benefiting EDS research
-Contact local radio stations
...There are many different ways to spread awareness.
**Not only do most people not know what EDS is, but most physicians have never heard of it either. These templates are great to help educate your doctors about EDS- provided by EDSNF (.pdf files)
- Wallet card- downloadable
With awareness and research there can be a cure! Help make a difference!
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