#rarediseaseday challenge – Day 28: RARE DISEASE DAY!
So everyone will have seen me posting about hospital this, infection that… Toe dying this, massive amount of drugs, something medical blah… And yep, it can get easy to skim past or ignore it all and think “nothing new, moving on, memes to read…”
Personally, I don’t know yet if I have a rare disease. Which may confuse you, but what is happening to me isn’t proving easy to diagnose. And believe me, my Doctors have taken many many many vials of blood and mri scans and xrays and chunks of flesh… My toes and fingers are essentially trying to die because my blood is too thick and my body has decided it doesn’t like my small blood vessels… or my blood. They don’t know yet. I am bloody lucky it hasn’t yet progressed to my other organs – kidneys being the likely next step.
What they can say is that it at least very closely mimics symptoms of small vessel vasculitis (they are now currently calling it ‘livedoid vasculitis’!). I had never heard of this condition before being advised that it looked like I had a really rare variant in approx. March 2016. By this point I had been really unwell for about 18 months already. So I got googling. Turns out its a group of super flippin’ rare auto-immune diseases where your body attacks your blood vessels. For funsies obv. I started learning about it as fast as possible, because knowledge felt like control and I really badly needed some illusion of that. My diagnosis has since become a little more vague due to my failure to abide by the rules regarding blood tests… But regardless of what variant or cross-over or mimic I actually have, Vasculitis UK have saved my mental and physical bacon.
To learn more about the volunteer run charity and the disease itself, please go to http://www.vasculitis.org.uk
Vasculitis UK have been a wonderful, crazy and understanding family from day one. Someone is online at any hour of the day or night due to all of our inability to sleep (pain or meds) and they have all been so incredibly tolerant of my rather madcap approach to life and chronic illness. They gave me a hefty kick to seek proper consultant advice – as regardless of best intentions, unless you are a specialist, vasculitis is simply too rare to be able to diagnose, make judgement calls safely or even get funding approved for the more exciting drugs.
I’ve now had quite a few exciting drugs. The most recent being cyclophosphamide, a chemotherapy drug that I spent many many months fighting to avoid having to take. I was too ill and medically weird though, so whilst having my second batch of five days of plasma exchange in three months, I was told it was chemo crunch time. Toes and fingers and kidneys vs. future babies and hair falling out and feeling pukey and crap… Since the start of October 2016 I have spent maybe four months in three different hospitals. The vast majority of people I have met through Vasculitis UK have had more than one round of chemo. Some are frequent flyers! It upsets and frustrates me to the point of tears that the general public and media perception of chemo is as a cancer treament: it is used SO much more widely than that.
So that is my message for this #rarediseaseday – CHEMO IS NOT JUST FOR CANCER.
If you are ridiculous enough to be offended by that, firstly please go google it and then either apologise to my hair that is falling out and make a donation to Vasculitis UK or unfriend me and walk away. I don’t need ignorant judgemental people in my life 😉 Donations can be made to the below page, where my awesome little brother and his buddies are running for Vasculitis UK and all of the amazing work they do and research they support. ‘K bye xx