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| Property of EDS Tags & Snags on Facebook |
For those of you who are new to my blog or have never heard of Ehlers Danlos Syndrome here is a brief 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.
Here are 2 videos I made about EDS to help educate people and raise awareness. The first video is shorter and based more on medical information, while the 2nd video is a little bit longer and provides quotes from people living with EDS and how it affects their life.
(The link to the mobile version of the above video can be found in the information section on YouTube, directly below the video)
(At this time there is no version of this video compatible for mobile devices including iPhones, iPads, and other cellular devices. I will work to resolve this in the near future but it is a lengthy process)
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 several 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. Here is a .pdf file outlining EDS (Facts of EDS). These templates are great to help educate your doctors about EDS- provided by EDNF (.pdf files)
-Guide for EDS in Children (for parents)
-Emergency booklet for Surgery (CD is no longer available)
EDS downloadable wallet card
EDS poster for coaches and trainers--(click here)
For pages I may have missed, here is a comprehensive page including other specialty areas and EDS documents--(click here)
*Many people who are beginning their journey with EDS don't know where to begin. When people ask me what to do first, I usually say they should see a genetic specialist to confirm their suspicions. If they have already been diagnosed, then the next step varies and depends on the individual case. There are many specialists involved in an EDS patient's case. These include genetic specialists, rheumatologists, surgeons, dentists, ophthalmologists, physical therapists, psychiatrists, pain management specialists, and many many more! Here is a Physician's Directory from EDNF.org and may be helpful if you don't know who to see.
There are many great Facebook support groups available and can be found by simply searching Ehlers Danlos Syndrome on Facebook. If interested in purchasing EDS zebra ribbon car magnets for awareness, I believe more were recently ordered and can be purchased via this Facebook group--EDS Awareness Magnets!!
I also created a few EDS awareness shirts on Zazzle a few months ago--
Version 1: click here
Version 2: click here
Other EDS products can be found on cafepress.com and zazzle.com--simply search Ehlers Danlos Syndrome
Other useful websites can be found in the EDS tab/page at the top of my blog!
With awareness and research there can be a cure! Help make a difference!
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