Rotton Rambles

The Why Behind the Walk

My Journey

I started this challenge with a goal in mind: to raise awareness of vasculitis. I realised that many people I am asking to support me are unlikely to know what this disease is, or how it affects someone’s life.

Vasculitis is a rare inflammatory disease involving inflammation of the blood vessels, and vessels in any part of the body can be affected. It is an autoimmune disease. You may have heard of lupus or MS, and vasculitis can attack the body in a similar way, but it can also be fatal.

Around 20,000 to 30,000 per million of the world’s population are diagnosed with vasculitis. In the UK, that is around 2,000 to 3,000 people each year. There are 18 different types of vasculitis, none of which are curable. They can be controlled with immunosuppressant medication, but treatment can bring a wide range of side effects.

My own journey to diagnosis began in February 2021 with pain in my joints, first in my legs. I battled on for a while, but over the following months the pain moved into my arms and hands until I could barely grip anything. I also had severe mouth ulcers which made eating difficult.

When I contacted my GP, I was initially treated for a virus with several rounds of antibiotics before I was referred to haematology for blood tests. That same night, we received a call telling me to go straight to A&E because my kidneys were failing at around 25% function and I was at risk of a heart attack.

After further testing, a consultant recognised my case and suspected vasculitis. Once confirmed, I started treatment with chemotherapy drugs and high-dose steroids. Over time, I began to improve and my kidneys gradually recovered.

In October 2023, I experienced another flare and this time it affected my sinuses, leaving me partially deaf. Treatment remains ongoing, including quarterly hospital blood tests and regular medication reviews.

I have Granulomatosis with Polyangiitis (GPA), a type of ANCA-associated vasculitis (AAV). It commonly affects the kidneys, lungs, ears, nose, and sinuses, and is characterised by inflammation of small blood vessels including capillaries.

I am one of the lucky ones. If you saw me out and about, you might not think anything was wrong. I am currently in clinical remission, but there is still around a 45% chance of a future flare within the next two years.