Hi, my name is katie and I am fundraising for The Ehlers-Danlos Society via a hike with my dad! Ehlers-Danlos Syndrome (EDS) is a genetic condition which affects the connective tissue in the body. I have the most common subtype called hypermobile EDS and it is thought that EDS is much more common than previously believed. The EDS society is leading their may campaign soon, so of course I want to take part.

EDS can affect any part of the body, which is why it took me 20 years to get diagnosed! It is an incredibly difficult condition to live with, and unfortunately most patients do not receive a diagnosis, are not believed or do not receive the appropriate care they require. The EDS society is aiming to change this, and slowly, things are improving for us!

My story with EDS begins as a baby. I quite literally was a newborn when I started to experience bowel problems. These continued all through the life, with doctors and nurses telling me “I would grow out of it” and had no idea what was wrong with me. I was always small, underweight and unwell. It was not long until I experienced a whole range of gastrointestinal symptoms which were putting me in an and e and making me really unwell! Even then, no one would take me seriously, even though I had been under specialists and had these problems as a baby. At one point, I was even diagnosed with anorexia, and had everyone convince me I really did have an eating disorder! Eventually, people realized I did not! One amazing gastroenterologist who never gave up on me saved my life, and admitted me for a feeding tube when I was really underweight and unwell. I had a gastric emptying scan and motility tests that showed I had gastroparesis and slow transit throughout my Bowels.

Unfortunately, EDS did not just affect my bowels. I generally thought I was going crazy, that it was all in my head or that I was making myself unwell. I had all these symptoms, no name for them and I just couldn’t work out what was wrong. My dietitian fought to understand what was wrong, and I put all the pieces together and she suggested I see someone about EDS. Turns out, I unknowingly had a family history which I then found out about through re-connecting with my cousin, and I have seen both a rheumatologist and geneticist who confirmed I have hypermobile EDS!

i have subsequently been diagnosed with postural orthostatic tachycardia syndrome and poor bladder compliance, and I am suspected to have mast cell activation syndrome! I’m always in pain, and my joints like to slip out constantly! EDS was finally the missing puzzle piece.

Despite everything my health has thrown at me, I am determined in my career and want to use my experience to ensure a positive future for people with EDS. I love participating in charity work, and I love hiking, so I thought I’d combine the two!

I would be so grateful if you would donate. The money is going to an incredible charity who are working so hard to improve the lives and care of so many. EDS may not be well known, or something you come across everyday, but to be honest, it’s a lot more common than you think and at any moment, anyone can be diagnosed with a chronic condition.

We are planning the hike for the 10th of may