May is Ehlers-Danlos Syndrome awareness month. What is EDS? It’s a connective tissue disorder that is inherited (passed down from generation to generation). EDS affects, skin, joints, ligaments, muscle, tendons, GI track (stomach), blood vessels and organs. Connective tissue is found in everything. People with EDS lack the vital part that helps keep them glued together.
Why a diagnosis is so important! If you are living with EDS you may not realize it, and EDS can cause internal organ problems. I am not saying this to freak you out, but if there is stuff happening due to EDS you may need to be treated and knowing EDS is causing problems is the first step.
EDS is more than skin and joints. I am affected by EDS in a multi-systemic way. You aren’t alone, don’t fear the diagnosis, embrace it, after you grieve the diagnosis and changes in your life please come and join me in acceptance. I will be here for you all the steps of the way. No one should have to live alone in their disease not ever.
Ehlers-Danlos Syndrome affects each person differently. There are various types of EDS, the ones I know a bit about are, hEDS, cEDS, vEDS, kEDS, sEDS, dEDS. Please note this isn’t a complete symptom list of each EDS but more of a short overview.
hEDS is Hypermobile Ehlers-Danlos Syndrome. People with hEDS generally have hyperextendable joints, mild skin hyperextension, abdominal hernias, abnormal stretch marks, atrophic scarring, prolapses, chronic wide spread pain due to dislocations and subluxations.
cEDS is Classical Ehler-Danlos Syndrome. cEDS is diagnosed through a genetic test. People with cEDS generally have hyperextendable joints, skin hyperextension, atrophic scarring, chronic joint dislocation and subluxations.
vEDS is is Vascular Ehlers-Danlos Syndrome. vEDS is a life threatening disease. vEDS is diagnosed through a genetic test. People living with vEDS can have the following, chronic joint dislocation and subluxations, congenital dislocation of the hip, rupture of the hollow organs, rupture of the aorta (aortic aneurysm), thin translucent skin where you can see the veins in the neck and chest,
kEDS is kyphoscoliotic Ehlers-Danlos Syndrome. kEDS is diagnosed through genetic testing. People with kEDS generally have the following hyperextendable joints, skin hyperextension, kyphosis or scoliosis that progress and can eventually cause breathing problems, severe hypotonia at birth, and fragile sclera.
spEDS is spondylodysplasia Ehlers-Danlos Syndrome. spEDS is diagnosed through genetic testing and patients with this generally have the following, soft doughy translucent skin, progressive short stature starting in childhood, poor muscle tone, and bowing limbs.
dEDS is dermatosparaxis Ehlers-Danlos Syndrome. dEDS is diagnosed through genetic testing and patients with this generally have the following extreme joint hyper-mobility, loose sagging skin, easy bruising, and hernias. This form of EDS can lead to blood clotting problems, and damage to internal organs.
Since EDS is not curable all that can be done is preventing further injury to the joints, bracing, physiotherapy, counselling, and other palliative care options.
It is important to know you are not alone. There are others like you living in this world, we can make a difference with our collective voices.
I hope you enjoy the first EDS slide show I did with other people in hopes of raising awareness for EDS. https://www.youtube.com/watch?v=H444kceT_0c&edit=vd
We all matter. Please reach out me to chat about your journey. I will gladly listen.