The average time to get a diagnosis of Ehlers Danlos Syndrome is 10 years.

2 years ago, I was diagnosed with Ehlers Danlos Syndrome after facing years of debilitating symptoms that affected almost all aspects of my life. By the time I got diagnosed, EDS had quickly taken over my life causing me to develop multiple complex secondary conditions such as MALS (median arcuate ligament syndrome) and severe gastrointestinal issues. This means that I am now completely unable to eat and rely on a feeding tube for all of my nutrition. This in itself, understandably, is extremely difficult and has come with many challenges, especially being a teenager having to deal with the constant stares and questions.

Ehlers Danlos Syndrome is invisible, you would never know that anything was wrong with me, and this is the reason that so many people, especially young girls, are misdiagnosed or not believed. Like so many others, I was constantly told it was 'anxiety', 'growing pains' or that I was 'just being dramatic' which of course, was never the case.

Ehlers Danlos Syndrome is a genetic connective tissue disorder, and as almost every body system requires connective tissue to properly function, practically all parts of the body can be affected in one way or another; joints, skin, organs, the digestive system, the nervous system and SO many more.

Dealing with conditions that are highly complex and so often misunderstood even within the medical world can have such a detrimental affect on your mental health, resulting in severe medical trauma from multiple hospital admissions almost always with no positive outcome. And this is why it is so important to me that future generations do not have to face the same things that I, and so many other people have had to, that they are able to have faith in the system setup to help you, rather than terrified to step foot near a hospital.

This is why I am running my first half marathon to raise money for the Ehlers Danlos Society, an organisation working to change this reality. A charity that is working hard to close the diagnostic gap, educate doctors, fund research and support people like me.