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Living with Scleroderma

Consultant Rheumatologist, Royal Free Hospital and UCL Division of Medicine, London, UK and Vice-President of Scleroderma and Raynaud’s UK
17 June 2020

Can you imagine your body being attacked by itself? Your skin tightening? Aching joints and swollen fingers? These are the features of a condition called scleroderma.

Here I explain what scleroderma is, what causes it, and what it’s like to live with and manage the condition, particularly in the time of COVID-19.

What is scleroderma?

Scleroderma is an autoimmune condition in which the body attacks healthy cells. This causes the skin, joints, tendons and internal organs to tighten.

It’s pronounced “Skleer-uh-dur-muh” and comes from the Greek words; 'sclero' for hard, and 'derma' for skin. This hardening of the skin can be one of the first noticeable symptoms as the body produces too much collagen. This can affect the skin, joints, tendons and internal organs. It causes scarring and stops the affected parts of the body from functioning normally.

What are the symptoms?

These three symptoms are often the first clues.

  • Sore swollen fingers or aching joints.
  • Raynaud’s phenomenon, a condition where fingers and toes change colour with temperature changes, stress or anxiety. For 97 percent of people with scleroderma, Raynaud’s was their first symptom.
  • Reflux or heartburn.

an image illustrating the early warning signs of scleroderma

Types of scleroderma

There are two umbrella types of scleroderma.

  • 'Localised' scleroderma which affects the skin.
  • 'Systemic sclerosis' means, for some, the internal organs are affected as well. This can be 'limited', where the condition progresses gradually or 'diffuse', the more serious condition which affects the whole body, and can cause more serious complications.

Many people are able to manage the condition and live full and productive lives. For others, it can be life-threatening as it can affect the lungs, heart and kidneys.

Cara Hockley, 17, developed purple fingers – a classic symptom of Raynaud’s. It was while searching for gloves on the SRUK website that she realised her Raynaud's might be one sign of a more serious condition. She was diagnosed with diffuse systemic sclerosis. As it affects her lungs, she is more vulnerable to serious illness from COVID-19. Another challenge is that hand sanitiser dries her hands out and hurts her skin ulcers.

Who does scleroderma affect?

Key facts

  • Scleroderma affects 19,000 people in the UK and 2.5 million worldwide.
  • It affects four times as many women as men, but men tend to have a worse prognosis.
  • It’s generally diagnosed in people aged 25 to 55 years but can affect people of any age, including children.

For some people, the skin problems associated with scleroderma may fade away on their own within three-to-five years. But scleroderma affecting the internal organs usually worsens with time.

If you’re diagnosed with scleroderma, it’s important to know how to look after yourself. There’s currently no cure, but there are various therapies and medical treatments available. These can reduce the impact of the disease and slow its progression.

Managing the symptoms

  • Look after your skin. Use oil-based ointments as they have longer-lasting effects than water-based creams.
  • Protect your joints. Physiotherapists and occupational therapists can help you to manage pain, improve your strength and mobility. They can explain how to adapt activities to carry out everyday tasks.
  • Keep Raynaud’s symptoms under control. Managing stress, stopping smoking if you smoke, and eating well can all help.
  • Take action to prevent and treat ulcers. Cover broken skin with plasters and keep warm.
  • Keep your eyes and mouth from becoming dry. Humidify rooms and steer clear of dry atmospheres. Take sips of water rather than big glugs.
  • Take care of your gut and bowels. Get enough fluids and eat a healthy balanced diet.
  • Listen to your body. If you get a lot of fatigue or anxiety, relaxation techniques, mindfulness and regular exercise may help with your mental and emotional wellbeing.
  • Keep medical appointments. Appointments may be via telephone or video at the moment, due to COVID-19. But hospital visits and tests will be organised when necessary.

Living with scleroderma

Georgina Pantano has diffuse systemic sclerosis and Raynaud’s. Her condition has meant she has had to give up work. She says: “I’ve had to adapt a lot and learn to accept help from family and friends in order to get things done.” Georgina is on daily medication and has regular infusions every three months. She has been involved in medical trials and research.

Cara, 17, takes lots of immunosuppressants and is awaiting a possible stem cell transplant which could transform her life. This has been delayed because of Covid-19. She says: “I understand why but it’s disheartening. Scleroderma has taken away all my prime teen years and it’s hard to find others my age going through it too.”

COVID-19 has affected lots of people with scleroderma. Sue Farrington, Chief Executive of SRUK, said: “Our helpline calls increased threefold at the start of lockdown due to the anxiety and stress of the situation. Callers were worried about access to drugs, treatment and appointments and they wanted clarification, guidance and reassurance during this ever-evolving crisis.”

What you need to know about scleroderma

Raising awareness

June is Scleroderma Awareness Month. To mark our #KnowScleroderma campaign, SRUK hopes to increase awareness and understanding across the UK, to improve faster diagnosis and treatment. World Scleroderma Day takes place on 29 June.

Scleroderma & Raynaud's UK (SRUK) is the only UK Charity dedicated to improving the lives of people with scleroderma and Raynaud's phenomenon.

Professor Chris Denton
Consultant Rheumatologist, Royal Free Hospital and UCL Division of Medicine, London, UK and Vice-President of Scleroderma and Raynaud’s UK

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