Tuesday 4 May 2021

The challenges of being hypermobile - HSD/EDS Awareness Month

Being hypermobile is a lot more than 'just being bendy' as a lot of people think is what Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome is about.

HSD and hEDS are hereditary conditions connective tissue disorders. I've been diagnosed with both conditions and according to my care team, in my case, there is very very little difference and in any case people with both hEDS and HSD can experience the same symptoms, problems and complications. I personally just refer to it as 'my hypermobility disorder' plus his saves a mouthful words most people don't understand!

Connective tissue, or collagen, is like the 'glue' of the body. It keep joints in place and organs together. When the connective tissue is faulty as in the case of those who has HSD/hEDS people's joints are help in place as they should and organs become too stretchy causing secondary complications with the affected organs. For me my joints regularly sublux (partially dislocate) as well as fully dislocate which is acutely extremely painful, but it's something that I've had to learn to live with; I have joints that are more affected than others such as my right shoulder (as this is the main part of my pony where I experience non-epileptic myoclonic seizures so my arm jerks a lot.), my right knee, left hip and my wrists and thumb and finger joints. The more my joints dislocate the looser the joints becomes making it more easily to sublet and dislocate. As well as joint problems the main organs that are affected for me is my gastrointestinal organs, bladder and my heart.

Along side the acute pain my joints and surrounding tendons, ligaments and soft tissue I experience joint pain on a near constant basis to varying degrees. 

Two pages of a small book being held open. On the the left page it reads "... you say 'you're falling apart' and you mean it literally." On the right page of an illustration of a stickman with their arm fallen off and is on the floor.
   © Stickman Communications   

Aside from this is the day-to-day challenges. Just simple things like using a pen or typing, using cutlery or chopping food pose problems. I've found ways around this like taking regular writing and typing breaks and eating foods that don't required to be copped. I also use adaptations like adaptive scissors, pens and electric can openers and I'll cut packets open instead of prising them apart.

Wearing splints when needed also help and my physiotherapist is going to take to me about taking my joints to help give them more stability..

Every day is a challenge but as with most disabilities you learn to adapt and live with the challenges that your disability brings.