About Vasculitis UK

Maddeline's story

What is Vasculitis?

As I am busy promoting awareness of my Charity Pop Concert and begging people to join me, it suddenly dawned on me that the people I am asking to support me, have no idea what this disease is, or how it effects anyone. Why would you know about it, when I only learnt of its existence eight months ago when I was given the diagnosis?

If you research the definition you will find something like ‘Vasculitis is a rare inflammatory disease which means inflammation of the blood vessels. Any vessels in any part of the body can be affected…’ It is an Auto-Immune disease, you may have heard of Lupus or MS, Vasculitis attacks the body in a similar way but can be fatal.

How rare is this disease? Well let’s put it this way – take £2.00 and play the lottery, you will have more chance of winning that than being diagnosed with Vasculitis. Some facts… 20,000 – 30,000 per million of the world’s population are diagnosed with Vasculitis, that is between 2-3,000 people each year in the UK. There are 18 different types of Vasculitis, and none of them are curable. They can be controlled with a lot of immunosuppressant drugs, which can cause a whole multitude of side effects. Another devastating fact my family and I have to face is that of the short term prognosis - ANCA-associated vasculitis (which I have), the experts say “ 20% of people diagnosed die within one year of diagnosis, a survival rate worse than breast and prostate cancer.” (Taken from research carried out by Rare Disease Association.)

Before writing this article I Googled ‘famous people with Vasculitis’ and the search came up with two people, just two. One of whom is Rosie Marcel known as Jac Naylor in Holby City. The other are the reports of the death of Harold Ramis, who played Dr Ergon Spengler in Ghostbusters and it describes his death as ‘slow and painful’, his specialist said that ‘only 1% of people in the USA have this disease.’

My journey to diagnosis started just over 16 months ago, I had an ear infection that would not go, and to cut a long story short, 30th November 2016 I ended up in Bedford Hospital, needing 7 transfusions, and three weeks stay. Many tests of all types carried out. I was losing blood, and no one knew where from, or where it was going… My lungs in fact were filling up with blood. My legs were so painful I could not stand up without crying, my eyes so sore I couldn’t open them… and the list goes on. I was discharged from Bedford Hospital on 20th December 2016 with 70mg of Prednisolone (Steroid) plus many other drugs. I was readmitted January 3rd 2017 and transferred to Addenbrooks for further treatment. After almost six months of Chemotherapy, I started to make an improvement, returned to work and now receive a drug called Rituximab. This appears to be working. My Vasculitis presented itself as Pnuemonia, and my specialist believes that the three occasions I thought I had pneumonia previously, were in fact Vasculitis. I have Wegener’s Granulomatoisis (GPA), which effects my lungs, kidneys, ENT and eyes, it is a Primary Systemic Vasculitis and means that my white blood cells are also trying to attack my organs and blood vessel – but if you see me you will not be able to tell there is anything wrong with me.

I consider that I am one of the lucky people; I am relatively fit and can continue teaching, a job I love and cherish family moments and looking after my grandchildren. What does the future hold? No one really knows as there is still very little known about this disease. I have not had too much damage done to my major organs, but there is still a risk this could happen. Even if I am lucky enough to have my Vasculitis go into drug free remission I am still susceptible to relapses and further damage (as we all are). However, I do intend to continue living my life to the full and will be raising awareness and funds for this very worthwhile charity.

For more information look at the Vasculitis website or drop me a line.

Copyright © 2018 Vasculitis UK. All Rights Reserved. Whilst we make every effort to keep up to date, any information that is provided by Vasculitis UK should not be a substitute for professional medical advice. Always seek the opinion of your GP or other qualified medical professional before starting any new treatment, or making changes to existing treatment.
Design & Hosting by On Screen