Meet Lynn, who has systemic scleroderma

21 April 2015

“Everyone knows me at the Royal Free Hospital. I’ve been everywhere. Every department I think: rheumatology, dermatology, plastics, orthopaedics, out-patients, lung function, cardiology, urology, gynaecology, the breast clinic...  the list goes on.”

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.

“The Royal Free has been part of my life for a long time and my experience has been good.

“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.

“As a woman, I have found the effects on my facial features devastating. Last year, along with a group of specialists, I was invited to give a talk at Downing Street about the condition and its treatment. I’m also involved with the Royal Free Charity to raise vital funds for research into reconstructive surgery and scarring.”

Over the past few years, Lynn has found a new passion – writing – and has been taking courses. She has just completed her first novel, a thriller set in Africa, inspired by real life events.

ENDS

Notes to editors

Image: Lynn Steblecki

Media contacts: rf.communications@nhs.net or call 020 7472 6665

About the Royal Free London NHS Foundation Trust

The Royal Free began as a pioneering organisation and continues to play a leading role in the care of patients. Our mission is to provide world class expertise and local care. In the 21st century, the Royal Free London continues to lead improvements in healthcare.

The Royal Free London attracts patients from across the country and beyond to its specialist services in liver, kidney and bone marrow transplantation, haemophilia, renal, HIV, infectious diseases, plastic surgery, immunology, vascular surgery, cardiology, amyloidosis and scleroderma and we are a member of the academic health science partnership UCLPartners.

In July 2014 Barnet Hospital and Chase Farm Hospital became part of the Royal Free London. Read our news story: A bigger trust, a better future.