I am one of the 400 million people worldwide who has a rare disease 🦓

Doctors have been taught for decades “when you hear hoof beats think horses not zebras” focus on the likeliest possibilities for a diagnosis not the unusual…

This causes so many zebras journeys to a rare diagnosis exhausting and relentess. Chuck that bloody text book away 👋🏻

My rare disease is invisible, but I was wasn’t. Over 5 years searching for answers, fighting to be believed, to be respected, to be helped, finally I got a diagnosis. A genetic connective tissue disorder, Ehlers Danlos Syndrome. Connective tissue is found in the entire body so symptoms are widepread with varying severity. EDS is considered a rare disease but many are misdiagnosed so more people have it than we think.

Never did I once question my sanity, my gut instinct or the crippling pain I was feeling. We know our bodies better than anyone, and we deserve to be listened to without judgement.

After being diagnosed you realise the struggle isn’t quite over. You have to rely on doctors that have little to no idea what your disorder is, baffling every specialist you see, finding theres lack of treatment and resources available, and feeling uncertain of the future as there’s no treatment or cure. The only way this can change is through education, funding and research.

This is why days like Rare Disease Day are SO important. Raising awareness and standing united to create change 🌈