Vasculitis - What is it? What does it mean? How do you live with it?

You've probably never heard of Vasculitis, that's ok most people haven't, but I'd like you to know just a little bit about it. I'll start by explaining how I know about it..

Go back 10 years, it was winter, it was cold, everyone had a cold or the flu. My Dad became ill, and the first symptoms were very flu-like.. he was tired, he was congested and every doctor he saw said it was a virus that would clear up. It didn't. We spent months going backwards & forwards to different doctors at different hospitals. He had problems with his eyes but no-one knew why. It wasn't until he went to see his GP as few months later feeling extremely unwell that things started to happen. His GP said (and I quote) "You need to get to hospital, I can't save your life quick enough." So off we went, he drove himself to the emergency department, he drove himself. When we arrived they did a few tests and said "You're not going home" and he didn't, he was admitted there and then. A couple of days later and they still had no idea what was wrong with him, but they did know his kidneys were failing and fast. Then out of nowhere a rash appeared on the bottom of his feet, these are actually blood blisters. A doctor saw this and happily announced that he wasn't a mystery anymore before shortly disappearring, only to return with the biggest pot full of different pills you've ever seen! I won't go into details about the medication he was given, but they were strong. Essentially, he was put on chemo drugs and high dose steroids. The difference they made to him was dramatic, he was actually able to walk around a few hours later. Considering we'd almost lost him multiple times in the few days before, it was amazing.

Fast forward to now, he still takes nearly 20 pills a day and has to monitor his blood pressure regularly, he was monthly blood tests and is constantly being reviewed by his consultant. He also has to monitor his blood sugar levels as the steroids cause diabetes when you're on them for a long period of time. But he's doing ok, he had a stroke in 2014, but he's bouncing back slowly but surely.

Now what is Vasculitis? Well, it's not one disease it's a whole group of them. It's tricky to explain so please watch the video below which was made by the Lauren Currie Twilight Foundation, Lauren was just 15 when she died from Vasculitis, and like my Dad she was ill with Wegner's Granulomatosis, one of the diseases that comes under the Vasculitis umbrella. It is fatal in 80% of cases.

Vasculitis Awareness from LCTF on Vimeo.

So hopefully you know a little bit more about Vasculitis, so that if (heaven forbid) it ever affects you, you'll have knowledge on your side! When my Dad was diagnosed, there wasn't a lot of information and when he googled it (rookie mistake) the internet basically told him he was going to die. Top tip: never google medical conditions!

If you have any questions, or if you'd like to know, just drop me an email or a comment, and I will help in any way that I can.

If we raise awareness of Vasculitis we can help people get diagnosed earlier which means they're more likely to be treated effectively, it will save lives, it could save yours. 

For more information you can visit the Lauren Currie Twilight Foundation site.


Stay safe, x