Diane's scleroderma means her body is attacking its own healthy tissue
Rare Diseases Diane lives with scleroderma a rare autoimmune condition affecting just 12,000 people in the UK. Scleroderma pronounced [skleer-uh-dur-muh] is a long-term incurable condition that is life limiting and can be life-threatening.
I’m living with Diffuse Systemic Scleroderma. Scleroderma is a rare autoimmune condition where my body starts to attack healthy tissue – my body is overproducing collagen, which is causing my skin, muscles and internal organs to harden.
There are different types of scleroderma and I have the systemic type, which is attacking my internal organs; it is hardening and scarring my lungs and kidneys, which reduces their normal function. I am currently on medication to try and slow down the progression but unfortunately scleroderma cannot be cured and so I will continue to battle this condition for the rest of my life.
"You may think it strange that I see myself as lucky but for many people living with scleroderma it can take years to receive a diagnosis and if this had happened to me I may not be here today"
Scleroderma is a hard word to say and an even harder condition to live with. Just a few weeks after being diagnosed I found myself in intensive care having a renal crisis and kidney failure. These were the worst weeks of my life as while I was fighting to survive my mum was taken ill and during my first week of dialysis she sadly passed away.
Although I was critically ill due to my condition I was so lucky in my treatment. My GP knew as soon as she saw my hands that I had a potentially life-threatening condition. The skin on my hands had become very tight and had started to pull my fingers in towards my palms. She did an urgent referral to a Consultant Rheumatologist who was able to diagnose my symptoms as scleroderma. You may think it strange that I see myself as lucky but for many people living with scleroderma it can take years to receive a diagnosis and if this had happened to me I may not be here today.
Once I had recovered from kidney failure I wanted to know more about scleroderma and first heard of Scleroderma & Raynaud’s UK (SRUK) through Google! I found the website and its information to be really good and found a local support group in Merseyside. It was great to meet someone with the same condition and I will always remember the first thing we did was compare our hands! Not long after that, I became a member and attended my first Conference.
Scleroderma impacts every aspect of my life from dressing in the morning to cutting vegetables for dinner as the skin on my hands continue to tighten.
My condition also affects my gastrointestinal tract so swallowing food becomes more difficult each day but I manage this by changing my diet and drinking lots of water at every meal. Since receiving treatment however, my lung fibrosis has improved and my kidneys have kicked back into life working at 28%-30% and I am no longer on dialysis thanks to the care of the Liverpool renal team.
I am fortunate to receive fabulous care and treatment by the consultants and teams who know my condition. One thing that I have become aware of since being diagnosed with scleroderma is the lack of consistency in diagnosis and treatment. For the future of scleroderma, I would wish for, not only a cure which I truly believe will happen but attention to be directed at creating greater education and awareness of the condition amongst those who we as patients see first, such as GPs. I would like all GPs to receive education regarding the red flags of the condition, so they can make prompt referrals, which can have a real impact on the long-term prognosis for patients.
Despite the challenges, I am determined to stay positive and want to help others with scleroderma and Raynaud’s. My attitude is to just get on with it, have a go and accept that you have to adapt to changes in life!”
Scleroderma & Raynaud’s UK (SRUK) is the only UK charity dedicated to improving the lives of people affected by Scleroderma and Raynaud’s.
SRUK exists to improve awareness and understanding of these conditions, to support those affected and to ultimately find a cure.
During February SRUK has been raising awareness of Raynaud’s, a common condition affecting 1 in 6 people in the UK. The most common feature of Raynaud’s is cold hands or feet and colour changes in the skin from white to blue to red, in response to changes in temperature or stress. SRUK has been increasing awareness and understanding of Raynaud’s as 1 in 100 people with Raynaud’s will go onto develop scleroderma.
To date SRUK has invested over £10 million into researching the causes and progression of both conditions and understanding the mechanisms to develop safer and more effective treatments as they work towards finding a cure.
If you would like to know more about the conditions or the work of SRUK visit www.sruk.co.uk