Ehlers Danlos Syndrome

By Nancy, United Kingdom, February 16, 2015

I am 20 years old, living in England with an invisible, chronic, disabling illness called Ehlers Danlos Syndrome or EDS as it can be shortened to. For those who may not know what exactly that is exactly, Ehlers Danlos is a genetic connective tissue disorder. Types may vary but the majority of us live a low quality life, housebound in daily chronic pain. Our symptoms range from our internal organs becoming overly stretchy, sluggish, slow and painful to our external joints being overly and extremely hyper-mobile therefore causing them to sublux and dislocate multiple times a day without warning.
EDS causes a lack/fault in the collagen of the body, this cannot be replaced. Collagen as I have always been told by professors and doctors, is visualised as the glue of the body that holds everything together. Without it, everything is stretchy, loose and over elasticated. Just to put this into perspective collagen is found in up to 95% of our body, such as our muscles, tendons, tissue, blood vessels, skin, bones, ligaments, internal organs etc. I personally have pain in every joint and organ possible on a day to day basis as well as spending most of my day in bed with chronic fatigue. On the rare days we manage to get out, the majority of us use wheelchairs.
'So, you just have a lack of collagen' some may be thinking, maybe that doesn't sound so scary but it is what has stopped me living an everyday life for the past 8 years.
18 months ago I started a blog called chronicteenagetears based on my life with rare chronic incurable illness. I did this due to how isolated my health had made me feel. I was a teenager, bedridden and had no one around me to relate too. You often feel like you could be the only person of your age going through something so rare and frightening. Without my blog, I would have never had known how many young people truly are in similar positions. It is scary how many people, young and old are living with these rare diseases’.

A lot of us with rare diseases/illnesses can look perfectly normal on the outside. This is called Invisible Illness. Being told 'you look well and you would never know you are sick' has always felt like a back handed compliment to me. These people don't see your bad days, low mood, the effort of the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others. I hope together, we can all raise awareness for our respected illnesses and make the public aware in order for us to gain a better quality of life, better medical care plans but most importantly, more awareness for future generations who are in need of a diagnosis.

Meet others who understand on the international EDS community: https://www.rareconnect.org/en/community/ehlers-danlos-syndrome

Nancy M

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