Every year on 29 June, people mark World Scleroderma Day. This year, many landmarks around Australia shone gold like sunflowers in June to support people living with scleroderma.
According to Scleroderma Australia, just as sunflowers follow the sun for warmth, people with scleroderma find the warmer weather more comfortable. That’s why sunflowers have become a hopeful symbol representing scleroderma in many parts of the world, including Australia.
“I want to be like a sunflower; so that even on the darkest days I will stand tall and find the sunlight.” – Unknown
Scleroderma is a chronic (or long-term) condition that affects your connective tissue. The word scleroderma literally means ‘hard skin’; as you’ll see, it’s an apt name for this condition.
Connective tissue is the cells and fibres that hold together the millions of cells of your body. It ‘connects’, or supports and holds together your joints, muscles, internal organs, skin and other body tissues. Types of connective tissue include bone, cartilage, fat, blood, and lymphatic tissue.
The connective tissue of people with scleroderma has too much collagen, which causes it to become hard and tight.
Anyone can develop scleroderma, but it’s more common between the ages of 30 and 60 and is more common in females.
There’s no cure for scleroderma, but it can be managed effectively.
Scleroderma is an autoimmune disease. That means it occurs as a result of a faulty immune system.
Your immune system is designed to identify foreign bodies (e.g. bacteria, viruses) and attack them to keep you healthy. But in the case of scleroderma, your immune system mistakenly targets healthy tissue. This triggers connective tissue cells, especially a cell type called fibroblasts, to make too much collagen and other proteins. This leads to the hardening and scarring of the skin and other tissues.
We don’t know why this happens. Scientists believe a complex mix of genes and environmental factors may be involved.
There are two broad classifications of scleroderma based on the amount of skin and other organs affected.
Localised scleroderma mainly affects the skin. It can affect both adults and children. There are two types of localised scleroderma, morphea and linear. Both have distinctive signs and symptoms. Localised scleroderma can sometimes restrict normal joint movement due to the hardening of the skin over the joint.
Systemic scleroderma (or systemic sclerosis) affects internal organs like the heart, lungs, kidneys, and skin. Systemic means it affects several organs and tissues, or the entire body, rather than a single organ or body part. Sclerosis means abnormal hardening of body tissue.
Systemic scleroderma can also be broken into sub-types depending on the symptoms. They are limited scleroderma and diffuse scleroderma.
The symptoms of scleroderma vary from person to person and will depend on the type you have.
Symptoms can include:
If some of your internal organs are involved, you may experience:
While these symptoms sound very scary, your doctor and specialist/s will monitor your condition and symptoms to prevent/treat complications.
“Keep your face to the sunshine and you cannot see the shadow. It’s what sunflowers do.” – Helen Keller
Scleroderma can be a difficult condition to diagnose. Symptoms vary significantly from one person to another and are similar to those of other conditions. They can also change or fluctuate. So, it may take some time to get a definitive diagnosis of scleroderma.
No single test can diagnose scleroderma, so your doctor will use a combination of tests to confirm your diagnosis. They may include:
While there’s currently no cure for scleroderma, medicines can help ease your symptoms. Your doctor will develop a treatment plan based on your symptoms. You’ll generally start on the lowest possible dosage and, if necessary, slowly increase the dose until your symptoms are under control. All medicines have side effects, so you should discuss these with your doctor.
Medicines may include:
As well as seeing your GP, you’ll likely see a skin specialist (dermatologist) and a specialist in joint and muscle conditions (rheumatologist). Other healthcare providers, like respiratory physicians and gastroenterologists, may be involved in your ongoing treatment.
Learn about scleroderma. Knowing as much as possible about your condition means that you can make informed decisions about your healthcare and actively manage it.
Lifestyle changes. Avoid exposure to cold temperatures, dress warmly and don’t smoke. This will help you manage Raynaud’s phenomenon.
Stay active with regular exercise. Exercise will reduce tightness and help keep your joints moving, especially those areas affected by scleroderma, such as the hands and wrists. Exercise will also strengthen your muscles and improve overall health. Talk with a physiotherapist or exercise physiologist about an exercise program tailored to your condition and symptoms.
See a hand therapist. They’re qualified physiotherapists or occupational therapists with extensive knowledge and skill in understanding and treating problems with the fingers, wrists, elbows and shoulders. They can help you keep your hands and wrists flexible and moving well.
Aids and equipment. Scleroderma can make some actions difficult, for example, using door handles or getting dressed. An occupational therapist can advise on aids and other gadgets that may help and provide additional solutions to make life easier.
Eat well. Eating a balanced diet can help provide you with better energy levels, help to maintain your weight, and give you a greater sense of wellbeing.
Get support from others. Research has shown that people with positive social support cope better with pain and chronic conditions. Family, friends, colleagues, and health professionals can help you manage. A peer support group may be another option. Contact Scleroderma Australia for details on support options in your state or territory.
“Someone was sitting in front of a sunflower, watching the sunflower, a cup of sun, and so I tried it too.
It was wonderful; I felt the whole universe in the sunflower. That was my experience. Sunflower meditation.
A wonderful confidence appeared. You can see the whole universe in a flower.“ – Shunryu Suzuki
Call our nurses if you have questions about managing your pain, musculoskeletal condition, treatment options, mental health issues, telehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.
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