Why support is key for life with EDS

Posted July 9, 2020

Harry sits in his wheelchair with a dog on his lap

My name is Harry. I was diagnosed with EDS when I was 17 due to pain caused by extreme hypermobility. However, except for that moment, it never affected me and I led a good life.

At 31, I had just married the most amazing person, we had bought a house and I was thriving in a new job. I was very successful and was also passionate about going to the gym and eating out. I picked up a prostate infection, which was horrific and the physical trauma flared up my EDS. Within 6 months I was wetting myself regularly as well as retaining urine and immediately put on catheters, likewise, after 9 months my hips began subluxing regularly and I was unable to walk.

Within a year and a half, I was fully disabled and falling regularly whilst transferring, resulting often in concussion. I had to have our house totally changed to support my disability, I had a long term catheter, and then my bowel and colon began to become inert. I was admitted into the hospital seven times within two months due to severe vomiting. To keep my bowel and colon working I had to take three picolax every two days, as well as use my anal peristine catheter.

I now suffer from gastroperesis, so am on a fully liquid diet of fresubin. I am struggling to keep fresubin down and in the last month have not managed to hit my necessary quota. My fingers, shoulder and shoulder blade, knees, and hips all sublux often. I see a great musculoskeletal specialist as well as the colorectal team, gastro, rheumatology, and urology often, however it is known there is no cure, it’s just a case of managing the deterioration.

It’s terrifying. I have a wonderful wife, and puppy Toby, and a carer who comes three times a day so I have support, but it doesn’t stop me wondering what the future holds. I do my best to live in the day and can honestly say I’m still happy. I just have to accept the challenges and find ways to manage them.

Mentally it can be very draining and difficult not to blame myself. I can’t accept how much my life has changed to what I had planned for me but more importantly my wife. I will always figure this but it is draining. Anyway, support is key for me, finding the right support and supporting others and I hope people will follow me and give me the support I need on Instagram. @harrythezebra1

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