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13/Jul/2023

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.

What’s the connection between scleroderma and sunflowers? 🌻 🌻 🌻 And what exactly is 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.

We don’t know the cause.

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 different types of scleroderma.

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.

Symptoms vary.

The symptoms of scleroderma vary from person to person and will depend on the type you have.

Symptoms can include:

  • thickening and hardening of the skin
  • skin dryness and ulcers
  • sudden constriction of the blood vessels, resulting in pale, blue, or red fingers or toes (Raynaud’s phenomenon)
  • stiffness and pain in the muscles and/or joints.

If some of your internal organs are involved, you may experience:

  • digestive issues, such as heartburn, bloating, constipation, stomach pain
  • lungs problems, such as shortness of breath
  • heart problems, such as chest pain
  • kidney problems may lead to high blood pressure.

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

It can be difficult to diagnose.

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:

  •  Your medical history.
  •  A physical examination.
  •  Blood and urine tests.

There’s no cure, but there are effective treatments.

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:

  • Topical corticosteroid (steroid) creams that you apply to your skin.
  • Anti-inflammatory medicines to help manage pain and control inflammation.
  • Corticosteroids taken as a tablet, injection, or into the vein (intravenous or IV) act quickly to control or reduce inflammation and may be used in the short term. They aren’t used for long periods as they’re associated with serious side effects.
  • Medicines that suppress your overactive immune system and control symptoms. These medicines may also be in the form of topical creams, tablets, injections, or IV infusions.

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.

There are things you can do to manage your condition.

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

Contact our free national Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issuestelehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

More to explore


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18/Jun/2021

A young person’s story of scleroderma

Meet Mabel. She’s 13 and has scleroderma, a chronic condition that affects the body’s connective tissue. She shares her story with Buffy.

How old where you when you were diagnosed with scleroderma?
I was 6, nearly 7 years old when I was diagnosed, and now I’m 13, so I just realised that is half of my lifetime ago!

Scleroderma’s a mouthful! Did it take you long to learn how to say it?
I knew how to say it but I didn’t really understand what it was at first. My little sisters, who were 3 at the time could also say it!

Can you remember how you felt when you were told you had scleroderma?
I was surprised, but at the time it really didn’t feel like that much. Now as a 13 year old, I can see how dangerous and scary it was.

What is the worst thing about having scleroderma?
All the medicine and appointments, because it meant that I missed a lot of school. I didn’t get to go to school as much.

Are there any good things about having scleroderma, or any ‘silver linings’?
The silver linings are that I’m not afraid of needles because I’ve had so many. When my friends and I have to have immunisations at school or a flu shot I’m not scared or worried.

You also meet a lot of kind, random people; people that you’ve never met before who give you gifts and are really nice.

What is one thing you wish someone had said to you, or wish you knew about scleroderma when you were first diagnosed?
That you don’t need to be afraid, as there are doctors and nurses who will be kind and help you, and other kind people who want to help you.

What would you say to someone else who has just been diagnosed with scleroderma?
I would tell them that all the needles are worth it, because they are going to make you healthy and your condition hopefully won’t get worse.

Take the medicine, even if you don’t know if it is going to help, your medicine will give you a better chance of improving.

What do you wish everyone else (teachers, friends, family, the big wide world) knew about scleroderma?
I wish more people knew what scleroderma is, rather than saying “what’s that?” when they either ask about my hands and arms, and I tell them it’s scleroderma and then they have no idea what scleroderma is.

Anything else you’d like to add?
Just because you have a medical condition doesn’t mean you are different, it means you have a different ability.

Appearances don’t matter because the outside is different to the inside.

If you’d like to share your story like Mabel did, about what it’s like to live with a juvenile form of musculoskeletal condition (e.g. arthritis, back pain, Perthes, fibromyalgia), contact Buffy Squires, Community Programs Coordinator at Musculoskeletal Australia.  




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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