My name is Kirsty and I’m 39 years old. I was diagnosed with GPA vasculitis on 15th May 2023, National Vasculitis Day.
My symptoms started in 2022 after having COVID-19. At first, the symptoms were mild but got more severe very quickly. I experienced lots of different symptoms but at the time I didn’t realise that they were all linked.
It started with pains and swelling in my joints. Especially elbows, hips, knees and ankles. It was so painful some days I could barely walk and couldn’t lift my arms. My fingers swelled so badly on one occasion I couldn’t hold a pen.
I also developed Episcleritis which is an inflammatory disease of the eyes. Rashes and blisters took over my legs and feet. I suffered breathlessness and walking up a flight of stairs was exhausting. There were nights I would crawl up the stairs because the pain of walking on my feet was excruciating. On other nights I couldn’t get up the stairs because it was too painful to move and I would sleep on the sofa. Carrying out daily tasks on some days was impossible. I knew something wasn’t right and contacted my GP.
After blood tests I was referred to a rheumatologist. Many more tests later I was told that my kidneys were failing! They believed that I had vasculitis, but I would need to have a kidney biopsy to confirm to the diagnosis. It was all very scary. I had never heard of vasculitis and had no idea at the time how serious it actually was.
Biopsy completed and diagnosis confirmed. I was started on an aggressive course of treatment straight away. I received a course of Cyclophosphamide infusions over a three-month period along with Rituximab infusions. High doses of Prednisone and other prescription medications got my condition under control.
I was officially in remission by November 2023. Thank you to all the team at Hammersmith Hospital, you saved my life ❤️.
Having just finished a second dose of Rituximab, one year later, I continue to live a pretty normal life.
I hope my story helps others with Vasculitis, you are not alone. Anyone reading this who is experiencing similar symptoms or knows someone who is experiencing these symptoms, please don’t ignore them.