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Together, we are More than Scleroderma™

More than Scleroderma™ has been developed to support and guide you during your journey, by providing information and resources that you can trust, all in one place.

Understanding lung problems

Learn more about lung symptoms during Scleroderma Awareness Month, so you can stay on top of your health. This is important, because over 1 in 4 people with scleroderma might develop noticeable lung symptoms that affect their daily activities. In very severe cases, these symptoms can affect how long they live, but this does not happen to most people.1,2

 

Symptoms of lung fibrosis may include:3,4

breathlessness

Breathlessness when doing simple tasks like climbing stairs

Tiredness

Sudden tiredness during the day

Chest pain

Chest pain and difficulty taking deep breaths

Dizzy

Feeling dizzy

Find out more about lung problems

Scleroderma explained

Scleroderma (also known as systemic sclerosis) is rare and affects people in different ways. Learn about the disease and its possible effects on the body.5,6

What is scleroderma
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Take control of your symptoms

Scleroderma can cause uncertainty and make it feel like things are out of your hands. Yet there are so many ways you can adapt to and manage your symptoms. This is an area where you can be in control.

Managing symptoms

Dealing with your diagnosis

Diagnosis of scleroderma can cause uncertainty. You cannot predict how it will affect you, however, there are ways that can help you cope with your diagnosis.

Adjusting to your diagnosis
adjusting-to-your-diagnosis
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Your role as a caregiver

Scleroderma can affect your life as well as the person's you care for. But don't worry, there is loads you can do to help lessen its impact.

Caregiving

Mandy's story

Staying positive can be difficult, but Mandy uses craft and creativity to continue to stay optimistic.

Thought of the day

Writing in a personal diary for just 20 minutes each day can help reduce stress. People often find that putting their thoughts in writing helps to alleviate anxious feelings.3

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You are not alone

Several groups support and represent people with scleroderma. Find contact details for your local organisation.

Find support groups

Importance of early diagnosis

Three people living with scleroderma discuss their experiences of diagnosis in Episode 1 of the Patient Talk Series.

Scleroderma Patient Talk Series
Importance of early diagnosis
"I've got an illness and I'm going to fight it. I won't beat it every day, but I'm going to beat it most days."
– Christina

  1. Solomon JJ, et al. Scleroderma lung disease. Eur Respir Rev. 2013;22(127): 6–19.

  2. McNearney TA, Reveille JD, Fischbach M, et al. Pulmonary involvement in systemic sclerosis: associations with genetic, serologic, sociodemographic, and behavioral factors. Arthritis Rheum. 2007;57:318–326.

  3. Scleroderma & Raynaud’s UK. Organs. Available: https://www.sruk.co.uk/scleroderma/scleroderma-and-your-body/organs/ [Accessed June 2023].

  4. University of Michigan. Scleroderma Program: Lung Involvement. Available: https://medicine.umich.edu/dept/intmed/divisions/rheumatology/research/scleroderma-program/patients/lung.htm [Accessed June 2023].

  5. Derrett-Smith E and Denton C. Systemic sclerosis: clinical features and management. Medicine 2010;38(2):109–15.

  6. Varga J and Abraham D. Systemic sclerosis: a prototypic multisystem fibrotic disorder. J Clin Invest 2007;117:557–67.