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Living with Scleroderma & Raynaud’s Disease

January 2016

Nicola with her 2 dogs

My name is Nicola. I consider myself to be a lucky scleroderma patient because I have minimal internal organ damage. I had to give up my career as a barrister in 2004. Now my full time job is managing my symptoms.

Scleroderma is a rare, incurable and potentially fatal autoimmune disease. Also known as systemic sclerosis, the disease causes the skin to thicken. Early diagnosis is essential to prevent internal and possible life-threatening organ damage.

My story

During the autumn of 1997, aged 24, my fingers became very stiff and swollen with shiny tight skin. This was accompanied by joint and muscle pain, constant lethargy and tiredness and difficulty opening my mouth. A specialised blood test confirmed that I had the relevant specific antibody which determines scleroderma.

The skin covering my entire body and face became extremely tight, itchy and painful. I was unable to stretch my arms or legs due to the tightness. In addition, my fingers and toes turned blue at the slightest temperature change and I felt cold all of the time.

Seven years of taking every immunosuppressant and disease-modifying agents available began. Fortunately for me, my body responded to the final treatment option available before needing to resort to a stem cell transplant.

In 2004, I ceased the daily 2g immunosuppressant regime of the previous five years, causing a relapse in my symptoms within a few months. I was forced to give up my 60-hour a week dream job, to sell my house and to relocate to my family home town near the seaside. In the hope that I could not only stop the disease progressing, but also reverse some of the damage which the disease has caused, I had to totally change my lifestyle to accommodate and respect my symptoms.

The disease

Due to the diagnosis being systemic, every part of my body is affected in some way. No two scleroderma patients display the exact same symptoms, which only increases challenges around diagnosis and treatment.

For me, my skin, neuro-musculoskeletal system and gastrointestinal tract have taken the biggest hit. I have a daily routine in place to manage these symptoms. This includes a strict diet in an attempt to minimise my gastrointestinal symptoms.

Scleroderma can affect digestion as well as nutrient absorption and can therefore lead to substantial weight loss and an overall feeling of general weakness. In December 2012 I bought a juicer and have enjoyed daily fresh fruit and vegetable juices since, resulting in a remarkable improvement in my symptoms.

I start each day by bathing my skin in liquid paraffin and then moisturising with a thick emollient. I was delighted that at my last medical review, the dedicated Professor Denton assessed my skin to have almost reversed back to being normal and healthy.

A warm bath also helps ease the constant musculoskeletal pain and stiffness which I experience, as well as helping to regulate my Raynaud’s symptoms for the day. Because of my scleroderma, I also live with Raynaud’s disease, which is when my small blood vessels are over-sensitive to changes in temperature, resulting in their narrowing. I take tablets to open my blood vessels, which has helped reduce the number of finger ulcers I get, caused by my poor circulation. However, I am very much housebound on cold days, trying to prevent the attacks. I wear gloves and Ugg boots all year round.

Living with an invisible illness, as well as a rare illness, most definitely comes with added challenges. You have to maintain a positive attitude while living with a body ‘hijacker’ to which nobody has yet delivered the ransom!

I hope to dedicate the remainder of my life to helping unlock the scleroderma enigma, with the dream that this diagnosis will be labelled ‘extinct’ in the future. In the meantime, I am eternally grateful to the wonderful multidisciplinary medical team that I have around me and with whom I know share this dream.