Fighting for a scleroderma free world: Nicola’s story.

29 June 2021
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Nicola has diffuse systemic sclerosis as well as Raynaud’s phenomenon, Sjogren’s syndrome, gastroparesis, rheumatoid arthritis and myositis. Despite her challenging journey, she has broken barriers for others living with autoimmune conditions and leads change through her advocacy work. Here, she tells her story:

“I was given a prognosis of 15 months to live.”

In 1997, at the age of 24, I woke up feeling terrible. I had painful, swollen fingers, difficulty swallowing and opening my mouth. Some months later, a blood test confirmed a diagnosis of systemic sclerosis. I was given a prognosis of 15 months to live.

I was put on a waiting list for a stem cell transplant. I had chemotherapy and tried all immunosuppressants available. One of the biggest symptoms that I had was tightening of the skin. I couldn’t take the top off a bottle of water or stretch my arms out. I still can’t hold a toothbrush. I have to wrap a towel around it first, as I can’t make a fist.

After a year, I was referred to the Royal Free Hospital. Luckily, I responded to a combination of immunosuppressants, steroids and chemotherapy. My condition was stabilised but this didn’t stop the disease. I’m now dealing with the damage of medications as well as an active disease.

“I did my law degree while having chemotherapy.”

When I was first given the 15-month prognosis, I thought it was an inconvenience. I got my head stuck into law books. When they told me about the prognosis I thought, “you don’t know who you’re talking to”. Being a barrister was my dream and, looking back, I can’t believe I achieved that.

I had two grams of chemotherapy per day for five years. On 1 March 2004, I got my ticket as a barrister and said no to more chemotherapy. But by June I was in a massive flare and knew I had to change my lifestyle.

The invisible disability aspect to my condition was quite a challenge because I’m proactive and determined. Professor Christopher Denton from the Royal Free Hospital helped me beyond the call of duty during my barrister exams. He was extremely supportive and saw how important that dream was for his patient.

Professor Denton gets excited when he sees small reversals of my skin and he reminds me that I’m still alive despite my prognosis in 1997. His dedication to his patients is incredible. He’s superhuman and yet is very humble.

“It’s never easy, but you can live some sort of life.”

Not a day goes by that I don’t think about the fact that I’m still alive with this diagnosis. I have moderate internal organ involvement. I haven’t had lung, heart or kidney transplants.

My blog, where I’ve documented my journey in detail, has had over half a million views. If I can use my qualifications and skills from my experience as a barrister then I should. I run the global Facebook scleroderma page and do everything I can to make sure that treatment for this disease isn’t a postcode lottery.

I want to show that if you have the right medical ‘dream team’ and your condition is managed properly, it’s never easy, but you can live some sort of life.

“My social life is going to my medical appointments.”

In the early days, my parents used to come to appointments. It’s only in the last few years that I got a scooter, which I use to walk the dogs. I had previously felt that by getting the scooter I was giving in. It’s a hard balancing act between giving in and recognising that your body needs to rest.

Mental health wise, it’s hard day to day, especially in winter. It takes away your hobbies and you want to try new things. I can’t knit or play tennis anymore.

Trying to control Raynaud’s and having a social life is very difficult. My inner temperature gauge is faulty. I take medication so that I don’t get digital ulcers but now I end up with lumps of calcium. I did some colouring the other day and ended up with calcium lumps on my fingers. Scleroderma teaches you that if people are only interested in how you look, they’re not your tribe.

I used to go to the gym and was quite fit. Professor Denton said that my history of fitness has helped my body to fight back. About the only thing I can do now is run a bath.

“When your world is turned upside down and the rug gets pulled out, it’s about attitude.”

I have an alter ego called Cosmic Fairy. It helped me realise that your job title is just a label. It doesn’t define who you are, and it makes you look within. I’ve done amazing things since my diagnosis.

In 2012, I changed my diet and became sober. In 2015, I spoke at European parliament for World Scleroderma Day… although when I got back home it took about three months to get over the trip because of fatigue and pain.

I was great friends with the late Anne Maudsley, who was an amazing scleroderma fundraiser and advocate. I started the hashtag #sclerodermafreeworld to highlight the urgent need for medical research investment.

I’m currently the patient voice on the NHS England Clinical Reference Group (CRG) for specialised dermatology, having served the maximum time on the specialised rheumatology CRG.

I’m a research ambassador with the National Institute for Health Research (NIHR) and was a patient voice on the urgent public health NIHR group for Covid-19 trials. I’m hopeful that similarities between long Covid and diffuse systemic sclerosis will provide more understanding and maybe a cure. The ultimate dream is a #SclerodermaFreeWorld.

Read more about scleroderma.

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