Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

hEDS – What Is It?

Ehlers-Danlos Syndrome Type 3/Hypermobility EDS (hEDS) is a life-long genetic disorder, which is caused by an abnormal mutation of an unknown gene. It causes a fault in the collagen, which is the glue that holds our bodies and organs together causing it to become weak and fragile affecting the whole body. Collagen is found in over one third of the human body, meaning that in hEDS, everything is compromised as a result of the mutation

The main symptom of hEDS is obviously joint hypermobility as the name would suggest, however it affects far more than just the joints. Whilst the condition does predominantly cause dislocations, subluxations and hyperextension, because connective tissue is found all over the body, the condition also affects internal organs causing additional problems with both the gastrointestinal system and the autonomic nervous system.

One of the most common and most debilitating symptom is hEDS is Chronic, widespread musculoskeletal pain. Because the collagen in EDS patients’ bodies is faulty and weak, it causes the joints to become weak and unstable. This means that in order to just stand up straight, it takes us twice the strength and energy, which causes pain all over the body.

The best way to describe it is that in normal, healthy people standing up is just a simple task they undertake every day requiring little to no strength, however for those of us with hEDS it takes the strength of an athlete to stand up, let alone to stand up straight without being round shouldered.

Personally, I was diagnosed as one of the lucky ones who had very few major symptoms from hEDS, with just a dodgy knee prone to subluxations and major fatigue. However, I was never told that whilst hEDS doesn’t progress in itself as the genetic fault responsible for the faulty collagen doesn’t change, the symptoms of hEDS can get worse.

Four years on from my diagnosis and I have pain in almost every joint I can possibly think of 24 hours a day, 7 days a week making even sitting down an extremely painful chore. My autonomic nervous system is also compromised, affecting my breathing, heart rate and more. Simple daily tasks such as straightening my hair, chopping vegetables and holding the kettle are now incredibly difficult and often require another person’s help.

My body is engulfed in a permanent state of exhaustion, meaning that by midday I usually feel completely drained yet the pain makes it difficult to sleep at night meaning the cycle of exhaustion continues.

There is no cure or treatment for hEDS, however I now know how hEDS affects my body and am learning how to manage it thanks to my incredible support team. I have regular Physiotherapy where I am given exercises to strengthen my neck and shoulders and combat some of the pain and help minimise effects such as shaking of the hands. I also use a TENS machine on a daily basis to help relieve some of the pain as well as heat packs.

I wouldn’t wish hEDS on my worst enemy – not even those who promptly left me out on a limb as soon as I became unwell. It is a horrible, debilitating disease but in a way I am glad I have to go through it. It’s because of hEDS that I am who I am today and it has made me value the good times so much more because I know they are now few and far between.

Yes, there may come a time where I can no longer work but until that time comes, I will continue to put on my positive pants and I will do everything I can to live as normal a life as possible alongside my amazing family and friends.

EDS will always be a part of me but it will NEVER define me!

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