My EDS Journey…
What is Ehlers Danlos Syndrome?
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.
Connective tissue makes up about 80% of the human body as as such EDS is a whole body disorder.
What are the signs and symptoms?
(Please note that this list is not all inclusive and just because something is not listed below does not mean it is not a symptom or secondary condition--there are simply too many to list)
Musculoskeletal
*An unusually large range of joint movement (hyper mobility) occurs with most forms, particularly the hyper mobility type. The loose joints are unstable and prone to dislocations, chronic pain, and early onset arthritis.
*Osteopenia (low bone density)
*Muscle fatigue (that increases with use)
*Tendon and muscle tears
*Spine deformities: Scoliosis, Tethered Cord (Spina Bifida), Occipitoatlantoaxial hypermobility, and Kyphosis
*Myalgia and arthralgia (muscle and joint pain)
Skin
*Stretchy, velvety, and fragile skin that tears easily
*Abnormal wound healing
*Easy bruising
Cardiovascular and other complications
*POTS
*Mitral Valve Prolapse
*Orthostatic hypotension
*Raynaud's Phenomenon
*Chiari Malformation
*Dysautonomia (autonomic dysfunction)
*IBS
*People with vascular type EDS are at risk of serious complications. Serious complications incude 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 media age of death is 48 years."
How is EDS diagnosed?
*Family history
*Clinical evaluation
*Beighton/Brighton criteria used to assess hyper mobility
*Genetic testing--only available for select subtypes
How is EDS treated?
EDS can present itself in many ways and affects everyone differently. Therefore, treatment plans are individualized and based on personal symptoms
*Surgery- may be necessary to stabilize joints
*Bracing and splinting of lose/unstable joints
*Physical therapy is important for strengthening muscles and improving mobility
*Use of assistance devices- crutches, cane, wheelchair, walker
*Other interventions may be necessary
Ehlers Danlos Syndrome video with quotes from people who live with EDS
So You Think You May Have EDS- great article about the symptom & signs of EDS
*This article (and blog for that matter) should not replace the advice of a medical professional. If you think you have EDS please consider seeing a genetic specialist.
So how can you help?
1. Post the following text (or your own version) to your Facebook or twitter page (or any other form of social media):
"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 (Ehlers Danlos Syndrome Network C.A.R.E.S.)
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| Property of EDNF.org |
3. Fundraising! Donations are also accepted through EDNF (Ehlers Danlos National Foundation)! There is very little research on EDS, in part because of lack of awareness. However, education and research will not improve if there is no awareness.
4. Be creative!
-Create an "Ask me about EDS" shirt or badge!
-Wear zebra stripes (the "symbol" of EDS)
"When you hear hoofbeats, think horses not zebras"
*In the medical world, zebra is a slang term for a surprising diagnosis. When you hear hoofbeats, it is natural to assume that they came from a horse, rather than a zebra. Likewise, doctors are taught to assume that the simplest explanation is usually the best. With EDS, the opposite is true. The cause is never common or simple, but rather exotic and complicated…We are ZEBRAS!
-Hold a bake sale with the proceeds benefitting EDS research
-Contact local radio stations
…There are many different ways to spread awareness.
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