We will be live on our Twitch channel, https://www.twitch.tv/northsouthcollide on Saturday 20th November from lunchtime till late! You can find us there several days a week outside of this stream.

rev's story

Before my own diagnosis, I had never even heard of vasculitis, so I can't expect anyone else to know about it either. So let’s go over the basic facts:

•    Vasculitis is an autoimmune disease affecting the blood vessels
•    There are lots of different types of vasculitis
•    It’s pretty rare
•    Turns out there’s blood vessels all over the body, so vasculitis can present itself in lots of different ways.

The type of vasculitis I have is so rare, that it doesn’t even have it’s own name. It’s small vessel ANCA-related with some other fun long words thrown in there, at one point I was told I was the 9th person in the UK to have whatever type I have going on. Lucky me?

For me, it all started in January 2015. I had a rash on the back of my legs which was so incredibly painful I ended up in hospital for four months.
The rash spread to my arms, which then turned purple and then black because all that skin and tissue was now dead and had to rot off. I now have the unfortunate knowledge of what rotting human flesh smells like (spoilers: it’s not good).

If the premature decomposing wasn’t enough, my heart nearly failed and I had a drain inserted into my chest to remove all the excess fluid from my heart and at some point I required a blood transfusion thanks all the internal bleeding.
One morning, I could no longer move the fingers on my left hand and the next day I was in surgery.
I had even more surgery later for some skin grafts on my left hand and elbow.
What japes.

Eventually, I was discharged, spent a lot of time at home recovering and going to physiotherapy because I couldn't really walk or move my left hand but around 2017, I went into remission and that was the end of that.



Then in June 2020, I learnt that my vasculitis had come back lmaooooo


Fortunately, this time round wasn’t nearly as severe as the last time, it was only playing havoc with my ears and bothering my kidneys, but it was caught early and now I’m merrily back on the immunosuppressants.

I’m pretty lucky though, I didn’t die (but boy did I nearly) and now I am well enough to work and do the things I enjoy, and I even have most of the movement in the left hand back. I’m no longer on steroids (thank you Jesus) but on Mycophenolate for the foreseeable future, so that’s pretty good.

TL;DR, vasculitis is a shitty disease that almost killed me and I want to raise awareness and funds for Vasculitis UK anyway I can so that hopefully in the future no one else will have to endure what I did!!