Friday 24 May 2019

GUEST POST by Kate* for EDS/HSD Awareness Month 2019

My dad has always been my hero. 
Every night I cried out in pain, he was there, with my hot water bottle and hugs.

I think this is my earliest memory of my symptoms, but my parents had shared concerns about my joints with doctors as soon as I was born. My shoulders were strange, and I always had pain in my legs and back. Of course, they were told I was fine, "it’s just growing pains" etc.

Growing up I performed my party tricks to everyone. My fingers could bend all the way back and I’d pop my shoulders out. "Ewww gross" people would say. I quite liked being a bit different.

At 18 I had agonising pain in my side, and my rib was sticking out. After a bone scan I was told it was just extra cartilage, nothing to worry about. 12 years later it's believed I actually have scoliosis.

I could list countless, missed opportunities for a diagnosis, but that would go on forever!!

It wasn’t until I was in my late 20s that I began my own research. Things just weren’t right. I had multiple diagnosis from adenomyosis to lymphocytic colitis, and I was in constant pain. I just couldn’t understand why I had so many issues. Then I stumbled across an article about Ehlers-Danlos Syndrome, it quoted ‘If you cant connect the issues, think connective tissues’. Lightbulb moment!!

It was a perfect fit! Joint issues, gastrointestinal issues, gynaecology issues etc. I cannot express how happy I am that I had found this! That was when the second leg of my journey began. My GP sent me to rheumatology, where I got a hypermobility diagnosis (still fighting for the EDS). I’m also under cardiology, waiting for a diagnosis, at the moment it’s suspected PoTS.

My health has taken a significant nose dive in the last two years, and I am in the process of finding suitable mobility aids to enable me to move around more.

But hold on... I’m only half way through this journey, so there’s no light at the end of the tunnel just yet.

However, I am hopeful I will get to a good place at some point in the near future, where I’m receiving the right treatment and support.
I love the NHS and cannot thank them enough for their hard work, but I can’t help but feel sad and slightly angry for the failures along the way. I honestly believe my health would be better now if I had received a diagnosis as a child.

The best advice I could offer anyone battling health conditions is persist! Keep pushing until you get tests and support.

I hope EDS becomes more recognised throughout society, and I will definitely do my best to spread awareness, so children and young people with EDS are not left behind.