The story of Claire

My life changed completely in July 2018 when I was diagnosed with dermatomyositis and secondary Sjögren’s. I went from being a fit active marathon runner to someone bed bound unable to walk, lift my arms, my neck couldn’t support my head, I had speech and swallowing problems and skin issues and swelling. I was hospitalised underwent a lot of tests and investigations to get the diagnosis then I was started on a treatment plan of high dose steroids and immunosuppressants. I then needed IVIG added as I didn’t respond to first line treatment.
I had a rollercoaster in the next few years of good spells which allowed my return to work then a setback in 2019 when the disease flared again which then led to lots of different medications and hospital stays. Unfortunately also a lot of damage to my body along the way and I medically retired in 2021.
I am slowly adjusting to my new normal and new limitations. I am used to the regular infusions all my daily medication frequent hospital visits and tests. I have a number of problems that come as the side effects of taking such potent medication but I’m thankful for a wonderful team looking out for me with a rheumatologist, dermatologist, GP, infusion clinic team, rehabilitation physio, dietician and community nurses. I’m also thankful that I still have a quality of life not always good and most definitely filled with ups and downs but we take it a day at a time and keep battling on!