Rare disease day from the patient's perspective

I had planned to write a piece for rare disease day sharing my own and my family's experience around rare disease. However the joys of having an autoimmune disease means I always have to balance my activities and not overdo things. Sadly I've been really busy and I feel like I might have the start of a really nasty cold. This means I am prioritising rest over writing. Sorry.

Perhaps just this paragraph alone though helps highlight the plight of many autoimmune patients. We have to constantly make sacrifices or we pay for it with a flare up and potential days, or even months, of being ill. Like many rare disease patients we also often struggle to get a diagnosis. In my case it took two years - which is ridiculous given that Hashimoto's is in theory easy to diagnose!

Whilst I may not be writing the long article on here that I had intended, I did have the honour to put together a whole load of tweets to share the story of a rare autoimmune disease patient. I reached out through @AutoimmuneChat and asked if anyone would be interested in sharing their rare disease story. A lovely lady got in touch and shared the battle she has gone through with a rare autoimmune disease, Anca vasculitis. Like so many rare and autoimmune disease stories it was brutal. But it was also filled with courage, strength and hope.

It is through sharing these stories that we can not only raise awareness but also show our support. Through sharing these stories we can let others know they are not alone in what they are going through. There are many of us who feel their pain. Together we are many. Together we are stronger.

So if you are on Twitter head on over to @AutoimmuneChat and share Mary's story and show your support for rare disease patients.