Lynn's story

More than thirteen years ago, Lynn Steblecki was diagnosed with systemic scleroderma, a rare auto-immune disease which sees the body attacks its own connective tissues. The condition causes scarring and hard, thickened areas of tissue. There is currently no cure.

For patients with systemic scleroderma, the disease often starts in the skin, resulting in loss of flexibility, spreading throughout the body and hardening key organs such as the lungs, heart, gut and kidneys.

For Lynn, formerly a business woman, this has brought about mobility difficulties and many other health problems.

“My original diagnosis was a shock at a time when information was scarce”, explains Lynn, who was born in Yorkshire and spent many years in Zimbabwe before returning to the UK in 1996.

“It was very scary. I was working in London at the time and had gone to my GP with painful swollen hands which were tender to touch and I was very tired all the time. Originally I was sent away but I knew something wasn't right and after six months I finally ended up at the Royal Free – which is the national centre for scleroderma – where I was diagnosed and treated.

“I'm in and out of the hospital. Every three months I'm picked up from my home in the New Forest and spend a week on 11 west ward for in-patient treatment. I'm given a powerful intravenous infusion of drugs to help manage the disease. In my case, the drug has to be given continuously for five days but many patients I know have this treatment in the out-patient clinic.

“My condition is very complicated and has brought me into contact with many departments and areas across the hospital. I have regular echocardiograms, my lung function also needs to be monitored. My hands are rigid and I've had operations to help with that and stem cells have been inserted into my face to help with facial movement.

Over the past few years, Lynn has found a new passion – writing – and has been taking courses. She has completed her first novel, a thriller set in Africa, inspired by real life events. You can purchase a copy of Prize Winner in our shop and a % of proceeds will go towards Scleroderma and Raynaud's.

Lynn's presentation from our Annual Conference 2017

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