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Scleroderma

Everything you need to know about living well with scleroderma

  • Introduction
  • Types
  • Symptoms
  • Daily Living
  • Support
  • Glossary

Introduction

If you, or someone you know, have recently been given a diagnosis of scleroderma, this guide is designed to help you understand more about the condition.

You may be wondering, what is scleroderma? Below, we explore what causes scleroderma, what the symptoms of scleroderma are, and what treatments for scleroderma are available. Remember, you are not alone, and there are many sources of support available to you and your family.

Any medical information provided here is for informational purposes and does not replace medical advice given to you by a medical professional. If you are concerned that you may have any of the scleroderma symptoms discussed below, please see your GP.

Introduction

What is scleroderma?

Scleroderma is an incurable autoimmune disease, which causes skin and tissue around the body to thicken. There are a two main types of scleroderma; the mildest form called localised scleroderma, and a more serious form called systemic sclerosis, which may affect the tissues of the internal organs in addition to the skin.

Only around 19,000 people in the UK have a scleroderma diagnosis, which makes it quite uncommon. Scleroderma usually affects people between the ages of 25 and 55, but it is not unheard of in children and people much younger than this. Scleroderma is much more common in women than men.

Scleroderma can lead to disability and, depending on which type of scleroderma a person has, the condition can be life-limiting if organs are affected. However, there are treatments to help relieve symptoms of scleroderma and enable those with the condition to live well.

Read more about scleroderma.

What causes scleroderma?

The immune system is a network of cells and organs in the body, which work together to fight off invading infections, bacteria and organisms to keep the body healthy. An autoimmune disease occurs when the immune system mistakenly attacks the body itself, such as tissues, joints, bones, or organs. This immune system dysfunction is what causes scleroderma, but nobody knows for sure why this occurs for some people and not others. It’s thought that genetics may be involved, and you are more likely to develop scleroderma if a family member has the disease. A person who has one autoimmune condition is also more likely to develop another autoimmune condition, for example, there is a link between Raynaud’s disease and scleroderma.

Explore what causes scleroderma.

Did you know... "Scleroderma is an autoimmune condition which occurs when the immune system attacks the body’s own tissues and cells."

Types of Scleroderma

There are two main types of scleroderma and, in this section, we look at the differences between each one.

Scleroderma is experienced differently by each person with the condition. There are different types of scleroderma, and the type that a person is diagnosed with is likely to affect the symptoms of scleroderma they have and the prognosis of the disease. Sometimes, the milder type of scleroderma can develop into the more serious type. Below, we cover the names for the different scleroderma types, the symptoms that are likely to be linked to each and point out the differences between the two main types.
Introduction

The two main types of scleroderma are:

Localised scleroderma – this type of scleroderma causes hard skin, which may gradually begin to occur in one place and then, perhaps, in other areas of the body. There are different subtypes of localised scleroderma too, which are defined by the areas of skin that are affected, and how. For example, plaque morphoea scleroderma causes patches (or ‘plaques’) of skin to become reddish brown. Localised scleroderma does not usually lead to complications, although the skin may be uncomfortable, unsightly and painful

Limited scleroderma (also called systemic scleroderma) and diffuse scleroderma – these differ from localised scleroderma because additional symptoms may occur. Both may also affect the functioning of internal organs, leading to other health conditions developing, or long-term health problems. Limited scleroderma affects certain areas of the body, whereas diffuse scleroderma affects the whole body. Read more information on systemic sclerosis

Did you know... "There are two types of scleroderma, localised and systemic, with the latter being more serious and life-altering."

Symptoms of Scleroderma

Read on to find out the symptoms of scleroderma.

Everyone will experience scleroderma differently and there are different types of scleroderma which affect the body in slightly different ways, with one being generally more serious. How scleroderma affects a person’s daily life will depend on the type of scleroderma they have, if treatment for scleroderma is effective, and how severe their symptoms are. Here we list some of the symptoms associated with the two main types of scleroderma. These symptoms are also present in other health conditions. If you think you may have any of the scleroderma symptoms listed here, talk to your GP.
Introduction

The two main types of scleroderma are localised or systemic scleroderma.

Localised scleroderma symptoms include:

• Patches of skin that may be itchy, look shiny, or discoloured, which may get better over time

• Areas of thickened skin on the face, head, legs or arms, which sometimes improve, but may cause growth or mobility problems if bone and muscle is affected

Systemic scleroderma is generally considered to be a more serious form of the disease. Its symptoms may include:

• Thickening of the skin anywhere on the body, as well as odd spots and lumps

• Infections of the skin

• Skin ulcers

• Organs and digestive system more likely to be affected

• Swallowing difficulties

• Heartburn

Raynaud’s disease – which may occur first

• Fatigue

• Joint pain, inflammation, swelling, stiffness due to the skin and tissue around joints becoming thickened and hard

• Weight loss

High blood pressure

Pulmonary hypertension

When skin thickens, it becomes very tight and may feel uncomfortable and painful. This may restrict movement of the affected part of the body. For some people living with scleroderma, the hands and feet may be affected, which sometimes affects a person’s ability to pick things up, grab, walk, etc. Some people also find they have scleroderma of the face, which can physically change their appearance, and may be a difficult symptom to deal with.

Diagnosis of scleroderma

Scleroderma can be difficult to diagnose. Some GPs rarely see the condition, but they are likely to refer you to a consultant. You are likely to see a rheumatologist initially. The thickening of skin is often the key to a diagnosis, but other tests may be performed such as a blood test for autoantibodies, which may suggest the person has an overactive immune system, as seen in scleroderma. Read more information on the process of scleroderma diagnosis.

Did you know... "Scleroderma causes thickening of the tissues of the body, mostly the skin, but in systemic sclerosis, the organs, digestion and joints may also be affected."

Living with Scleroderma

Read on to discover more about living with scleroderma and how it may affect daily life.

Learning that you have scleroderma can be difficult and receiving a diagnosis of scleroderma can lead to many concerns. You may never have heard of this condition and be worried about what the future may hold for you, and how it will affect your daily life.

Many people live well with scleroderma and their prognosis is good. In this section, we provide a lot of information for you to keep close to hand, and answer some of your questions about living with scleroderma. We cover: treatments for scleroderma, daily living aid products for scleroderma, diet and exercise for scleroderma and where to go to get support for scleroderma.

Introduction

Impact on daily living

Scleroderma is likely to affect a person’s life in various ways, depending on their symptoms, and which type of scleroderma they have. Here, we list some of the challenges that a person living with scleroderma may face and ways they can help to combat these head-on.

Symptoms – scleroderma symptoms may be difficult to deal with, causing visible, and sometimes invisible, issues. Getting the right treatments for scleroderma are important, and we cover these in the next section. Talking about your symptoms may also help, and Scleroderma & Raynaud’s UK provide a helpline for those affected by the condition to talk about their experiences and ask for advice. Similarly, talking to others who have scleroderma may help, and the NHS provides an online scleroderma forum

Physical appearance – because scleroderma causes changes to the skin, such as tightening and thickening, the skin can change appearance and some people with the condition may be conscious of this if the skin is visible to other people, e.g. if their face is affected. There are creams and treatments to help skin look and feel better, which we talk about in the next section. There are also ways to cover areas of skin that people are conscious of, using camouflaging make-up and other products. Read more about scleroderma and skin camouflage

Lifestyle – people living with scleroderma can do most of the things that other people do, such as go on holidays, work and enjoy a social life, but scleroderma symptoms may affect these activities. It is advisable for people living with scleroderma to have a healthy lifestyle as much as possible, to retain their general health. They should try to eat a healthy diet. Some people may develop coeliac disease, so may require a gluten-free diet. Getting regular exercise is also important. Quitting smoking and reducing high blood pressure is also really important

Fatigue – a common symptom for several reasons, scleroderma causes fatigue which can be difficult to manage and may affect everyday life. Fatigue may be due to medication side effects, using lots of energy due to having weakened muscles, difficulties sleeping at night, and pain. Generally, people experiencing fatigue are advised to spread activities out across the day and week, ensuring they have frequent periods of rest, rather than doing too much one day and feeling exhausted the next. Read more about scleroderma and fatigue

Sex – most men and women living with scleroderma are able to have sex and enjoy sex, but some may have issues if scleroderma affects their genitals, or if they develop depression, anxiety or health conditions. There are lots of ways to help with sexual health difficulties though and these should be discussed with your GP in the first instance

Pregnancy – lots of women living with scleroderma are able to have children but some may have increased risks to themselves or their baby. Read more about pregnancy and scleroderma

Prognosis and survival – living with a chronic and life-limiting health condition inevitably brings anxiety about the future and what this will hold. Most people live a full life and are able to do all the things that people without the condition can do. Scleroderma is unlikely to be life-limiting for them. However, for others with systemic scleroderma, which affects internal organs, they may be living with the prospect that their condition may progress more severely and affect how long they live. This can be a difficult thing to deal with, but there are lots of support services that can provide help for scleroderma patients in dealing with the unknown aspects of their condition. Talk to your GP or scleroderma specialist if you are finding it hard to manage concerns about prognosis and survival

Scleroderma treatments

For some people, scleroderma may get better on its own, depending on the type of scleroderma they have, but systemic scleroderma may progress over time. There are a variety of treatments for scleroderma which may be available, depending on a person’s symptoms, such as drug medications, localised or topical treatments, therapeutic programmes such as physiotherapy, and many self-care treatments.

The scleroderma treatments listed below are for some of the more common symptoms – this is not an exhaustive list, and if you are finding any of your symptoms difficult to manage, it is advisable to talk to your GP or specialist team.

Skin soreness, ulcers, tightening, dryness – many people find it is key to keep the skin moisturised which may provide some relief to skin, and some people find that physiotherapy can help with tight skin

Raynaud’s (poor circulation, extreme sensitivity to temperature changes) – try to stay as warm as possible by wrapping up in cold weather, wearing extra pairs of gloves/socks, using heat pads, keeping your house warm etc

Digestion – people who are living with scleroderma may have digestive or gastrointestinal symptoms such as diarrhoea, gas, bloating, constipation, heartburn, weight loss, poor appetite. There are many medications that may be used as treatment for scleroderma symptoms such as these, and lots are available over the counter. However, it’s a good idea to discuss these treatment options with your GP or specialist scleroderma team to ensure they are suitable. Otherwise, many digestive issues can be managed through diet, and we talk more about this in the next section

High blood pressure – this may be treated with lifestyle changes and medication such as ACE inhibitors

Joint pain and inflammation – this can be treated with pain relief and anti-inflammatory drugs

Stress, anxiety, depression – issues such as these are common for people who are living with a health condition, and there are lots of ways to help treat these difficulties, including anti-depressant medication and psychological therapies

In severe cases of scleroderma, drugs that target the immune system may be prescribed.

Read more about scleroderma treatment.

Products for scleroderma

Daily living aids are products designed to help you with mobility, getting around the home, getting around outside, getting ready and doing chores around the home.

At NRS Healthcare, we are experts in daily living aids. If you have scleroderma, you may find the following daily living aids useful.

Mobility aids – scleroderma can affect a person’s ability to get around, and these products can help you do this more easily and safely:

o Duo Walking Trolley

o 3-Wheel Rollator

Comfort when sitting – if your feet are affected by scleroderma, you may find comfort from raising your legs when sitting, and some people find a rise and recline chair is useful to help them get in and out of a chair:

o Foot Rest

o Rise and recline chair

Grip helpers – if scleroderma is causing sore or tight skin on the hands, you may have difficulty gripping a pen or eating utensils, and these aids may help:

o Foam Tubing

o Pen Grippers

o Kura Care Cutlery

o Good Grips Cutlery

o Thermo Mug

o Dressing aids

o Food preparation aids

Help around the home – you may find that your symptoms affect your ability to carry trays/meals or stand for long periods, and these products for scleroderma may help:

o Household trolley

o Perching stool

Raynaud’s aids – if your hands and feet are sensitive to the cold or temperature changes, you may find that a wheat warmer provides relief:

o Wheat Warmer

NRS Healthcare has a team of occupational therapist product advisors who can advise what products may be useful to you. Contact them for free on 0345 121 8111 or email [email protected]

Diet for scleroderma

An adequate, nutritional diet for scleroderma patients is important, whatever type of scleroderma they may have. People with systemic sclerosis are likely to have digestive issues and may experience weight loss as a result of their condition, so eating a balanced diet is essential. It is important to get enough calcium, vitamin D, iron and healthy fats. Fibre can help with blood pressure and anti-inflammatory foods such as ginger may help reduce some symptoms of scleroderma. Read more about scleroderma diet.

If a person has coeliac disease as well as scleroderma, they may need to follow a gluten-free diet. Read more about coeliac disease.

Some people take vitamins and minerals as supplements for scleroderma, such as vitamins A, C, D, E, K, folate, B12, zinc and iron. Some people take probiotics to help with digestive issues, or anti-oxidant and anti-inflammatory supplements such as turmeric, selenium and beta-carotene. It is advisable to discuss this with your GP before taking scleroderma supplements.

Exercise for scleroderma

Scleroderma exercise is important but may feel challenging for some people, for example, if their skin is tight and uncomfortable. Any activity that gets the body moving, within the reasonable limits that a person can manage, is beneficial for joints, muscles, lungs, heart and mind. It is important for people living with scleroderma to obtain advice before starting an exercise programme from their specialist team or a physiotherapist. Read more about how exercise may help scleroderma.

Scleroderma and employment

Lots of people who are living with scleroderma are able to work. Some people who have systemic sclerosis that progresses to a more serious stage, may decide to leave work if their scleroderma symptoms make working difficult.

Did you know... "Systemic scleroderma can lead to complications and healthcare conditions such as pulmonary hypertension."

Support for Scleroderma

Remember – you are not alone!

We hope the scleroderma explanation provided here has been helpful. Scleroderma is not generally very well understood, which may be challenging for someone who receives a scleroderma diagnosis.

There are a number of options for scleroderma help that are available to you. Some people find it helps to talk to others who are affected by scleroderma, which is why we list some online scleroderma support groups below. We also include links to other online resources with information and advice. If you are concerned about anything you have read in this guide, please discuss with your GP.

Introduction

Communities

Scleroderma and Raynaud’s UK online community – a forum for people affected by Raynaud’s or the associated condition of scleroderma, to share experiences

Scleroderma Facebook Group – an online support group for scleroderma patients and their families

Resources

Coeliac UK – for those living with scleroderma who also have coeliac disease, Coeliac UK provides a wealth of information about the condition

NHS – source of official medical information about causes, symptoms and treatments for Raynaud’s and related conditions

PHA UK – a charity supporting people who have pulmonary hypertension, which may be a complication of systemic sclerosis

Scleroderma and Raynaud’s UK – a charity providing support and information to the millions of people living with scleroderma, Raynaud’s and associated conditions, with an online community and lots of online information about daily life with these conditions

Did you know... "Scleroderma treatment focusses on managing symptoms with topical skin treatments and medications."

Glossary

Unsure what something means? Checkout our Glossary section below.

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology.

Medical terms are often known for being tricky to pronounce and, if you’re not an expert on the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of scleroderma as straightforward as possible.

Introduction

ACE inhibitors

– medication used to treat high blood pressure, which blocks the body producing angiotensin II, a chemical that narrows blood vessels

Autoimmune diseases

– conditions where the immune system attacks the body, mistaking it for an invading virus/bacteria

Coeliac disease

– digestive health condition caused by the immune system reacting to a protein called gluten which is found in wheat, barley and rye, and then attacking the tissues of the gut, causing intestinal damage and an array of unpleasant symptoms

Pulmonary hypertension

– a condition caused by high blood pressure that affects the pulmonary arteries, damaging them and affecting blood supply to the lungs and heart

Rheumatologist

– a doctor specialising in conditions affecting the musculoskeletal system e.g. bones and tissues


Last updated on 10/07/2019

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