My story – Blake
Hi, my name is Blake, and this is my story with hEDS (hyper-mobile Ehlers Danlos syndrome). My journey started as a small child where I had problems with co-ordination where I would fall over easily, and I was constantly injured. This was always just put down to me being a “clumsy child” however, now looking back I can see this was not the case. My passions growing up were mainly football and street dance although I was very sporty as a child and would join many sports clubs at school. As time went on, sports and dance became more and more difficult since my joints would subluxate and dislocate and would leave me more injured and in pain as time went on.
As I aged and now at 20, I rely on strong painkillers to help with the widespread joint pain all over my body. Alongside this pain, I also have some other telltale symptoms such as having stretchy skin that would graze and cut easily as well as being very hyper-mobile. Due to this and having very unstable joints, I would commonly subluxate and dislocate my knees, ankles, hips, shoulders, wrists and finger joints. As I’ve gotten older, this has only gotten worse, therefore, I had to give up my passions and hobbies despite getting quite far with dance in terms of competitions and showcases. As well as having unstable joints, I also have very stretched stretch marks and very soft skin which is another symptom of EDS. One other symptom I have had since a young child is having difficulties going to the toilet for a number 2. I found I was constantly constipated and struggled to go and would be in immense pain whenever I would try to go.
Now, my condition has taken another turn so now I can’t digest any food and can only drink. I went to the hospital and the doctor said it’s due to my EDS that I can no longer digest food as I should. She said it’ll most likely be a long-term condition that’ll have a big impact on my life especially as I am a recovering anorexic. Currently, I am only getting my nutrition from nutrition supplement drinks called Ensure which was prescribed to me. This is my life so far and I hope by writing this, I will help at least one person feel less alone through their diagnosis.
Neurodiversity and EDS/HSD
Like a lot of conditions, EDS/HSD have quite a few co-morbidities including being on the autism spectrum and having Tourette’s Syndrome. There is a theory that due to the collagen and connected tissue being part of the foundation of neurological tissue, weaker connective brain tissue may be the reason for autism for some of those on the autistic spectrum. It has also been reported that there are some similarities between EDS and autism due to coordination problems which may later lead to further complications and injury in the future.
Top tips for thriving better in education – primary, secondary, college or Uni
Thriving in education is tough enough without the struggles of any form of EDS or HSD. However, hopefully with these tips you will be able to manage education a bit better whilst battling EDS/HSD.
Pacing yourself is very important so you don’t get “burnt out”
Staying on top of any medication you may take is very important
Use mobility aids if you struggle with mobility
Know your limits if you engage in physical activity
When sitting down for a long period of time it may be beneficial to change sitting positions so you’re more comfortable and are less in pain
Wear supports/braces/splints for areas that cause problems for your joints such as your knees, ankles etc…
If pain medication isn’t an option, then learning breathing techniques to help with pain may help
Try and get a good night’s rest by creating a healthy sleep schedule as EDS can cause insomnia if you do not