Understanding scleroderma ~ talking with children

Scleroderma is a very complex autoimmune disease, usually manifesting in unique ways between each individual. Between this, and the fact that it is not yet commonly understood or even heard of, it can be really hard to wrap our heads around scleroderma, especially at the start of our journey of learning. We have found that while there are countless incredible resources out there to educate us about scleroderma, they usually go in-depth, which can understandably be overwhelming when we’re first diagnosed or trying to explain scleroderma to children.

So, we have compiled a simple list to help with understanding scleroderma to help anyone’s journey learning about this rare disease. Whether you have just been diagnosed, know someone who has it, or are trying to help others understand, the world is certainly a better place because of your consideration.

Scleroderma, also known as systemic sclerosis (SSc), is both a rheumatic and autoimmune condition.

Rheumatic means that it usually affects internal body structures, such as joints, tendons and ligaments. This can be through inflammation and swelling and thus may result in different levels of pain (CDC, 2022). One of the most common rheumatic conditions is arthritis, and it is so common that there are several proven ways to alleviate its impact on the body.

Autoimmune means the body can’t distinguish between our own cells and foreign cells, causing the body to mistakenly attack cells unnecessary (Orbai, n.d.). This means our bodies might be in a state of immune defence more often than necessary, or flare up more regularly. This is also highly common, and while it generally cannot be cured, it can be treated in many different ways to find what works best for individual circumstances.

There are two main types of Scleroderma; Localised or Systemic.

Localised Scleroderma often only affects the skin.

Systemic Scleroderma affects the skin as well as other body systems, such as blood vessels and internal organs.

Who It Impacts

While Scleroderma can impact both sexes, it is three to four times more likely to arise in females than males. It can also occur at any age, but it is most common in 40-60 year-olds. It is not exclusive to any particular race or ethnic group, meaning anyone can get it, no matter their background.

There are estimated to be over 6,000 people with Scleroderma in Australia alone, so no matter your age, race or sex, know you are not alone in your journey with it.

Causes

Scleroderma is not contagious, infectious, cancerous or malignant. It develops purely in individuals and while the exact cause is not yet known, research suggests there are a few factors increasing our chances of developing Scleroderma, including:

Genetic Makeup (however, it is not inheritable)
Environment (certain chemicals may trigger Scleroderma)
Immune System Changes (an excess production of collagen may arise as a result of abnormal immune or inflammatory activity)
Hormones (this theory is due to the increased risk in females)

(NIH, 2023).

Symptoms

The most common indication of Scleroderma is thickened skin, but other common symptoms may include fatigue, still joints and dry skin. Raynaud’s Phenomenon is also a key symptom of Scleroderma, indicated by decreased blood flow to fingers, resulting in pale fingers that turn blue when exposed to cold and red when warmed.

Physical Impacts of Scleroderma

Scleroderma is milder in its localised form, so the main physical impact of this type is restricted joint movement as a result of the hardening skin in joints. It can also result in dry and itchy skin.

Systemic Scleroderma can have greater impacts that go beyond hardening and tightening skin (but still include it, lucky us). As it may impact internal organs, there may be increased complications there, such as kidney diseases. It can also damage our blood vessels.

Again, Scleroderma varies severely between individuals, so it’s important to know yourself and monitor your personal changes that may indicate further complications with Scleroderma. (Your doctor will also be really helpful with tracking this, so make sure to stay open with them so you can monitor the physical impacts together.)

It’s very common for Scleroderma, and any kind of medical or life changes, to result in having a psychological impact as well. If you find this to be the case, reach out to loved ones, get professional help and connect with others with Scleroderma. Remember there are so many people out here to help you, no matter your situation.

Diagnosis

Scleroderma is never the first assumption when its symptoms are present, so your doctor will most likely focus on ruling out other, more common conditions first. Once Scleroderma is suspected, however, the doctor will start by asking questions about the symptoms, previous medical history and doing a physical exam (Hopkins Medical, n.d.). There’s a chance a biopsy will be conducted to examine affected skin under a microscope. Biopsies aren’t usually painful, but a doctor may recommend painkillers if you feel any sort of discomfort. A urine, blood or other internal body sample might be taken to see if any internal organs are affected.

Remember, if you are ever feeling nervous or unsure, it is your right to stop any procedures happening and ask for more information. Your doctor will always respect any concern you may find yourself with and try to make an appointment of any kind easier for you.

Treatment

While there is no cure for Scleroderma, treatment is still available to relieve symptoms, stop the progression of the disease and make life more enjoyable overall (NIH, 2023).

There are different types of medications, such as anti-inflammatory medication, which can help with different aspects of Scleroderma.

Ensuring proper hydration and regular moisturising (especially after each time any part of your skin gets wet) can relieve dry skin and itchiness.

Early diagnosis and ongoing monitoring with health professions are crucial to maintaining and treating Scleroderma.

Some people with Scleroderma also find that moving to a warmer climate eases symptoms, making the skin softer and less tight (Whitehill, 2016). A similar thing can be said about swimming in the ocean for many people (so, if you ask us, it’s time to get that northern beach home you’ve always wanted! For medicinal purposes, obviously.)

Why a Sunflower

Scleroderma is symbolised by a sunflower in many parts of the world because of this helpful impact of warmer climates. As sunflowers always face the sun for warmth, it reminds us that the best thing we can do is the same. It also reminds us to shine bright and find the positive, even when we might not want to.

In 2024 we created National Sunflower Day, and as March is the season for sunflowers to bloom here in Australia, it’s fitting because the sunflower is scleroderma’s emblem.

🌻 National Sunflower Day raises awareness for scleroderma, and occurs annually on March 6. We LIGHT UP AUSTRALIA with a vibrant yellow glow for our annual SHINE Like A Sunflower campaign, and encourage people to WEAR YELLOW. We also ask people to donate anything they can, to help raise essential funds dedicated to scleroderma specialist nurses, and scleroderma research. If you want to know more, view our SUNFLOWER DAY page.

Where To Go From Here

Now that you have the basics of Scleroderma down pat, you can deepen your knowledge by reading the resources below. Or, if you need a bit of a break from learning, take it! You know your limits better than anyone.

As mentioned above, it’s highly recommended you get psychological support to help navigate adjusting to your Scleroderma diagnosis. However, we also can’t stress enough the importance of getting psychological support for your close family too. While it is a big change for you, it also is for your partner, children, or any other loved ones you have. Giving them an outlet to discuss their thoughts and gain strategies to manage their own side of life with Scleroderma is one of the best things we can do.

Join our community to get in touch with others, share your story and/or learn more tips for living with Scleroderma. While Scleroderma is a big life and individual change, one of the better things to come out of it is the incredible community we connect with daily.

How to Support Children With or Around Scleroderma

Being transparent with children is the best thing you can do for them. Teach them about Scleroderma, how it impacts people and what changes it means must be made to their lives. Ignorance is what makes fear or misunderstanding bloom, so do your best to educate them on the subject so that they aren’t scared of the changes they can see.

Empower them to become a sunflower hero. We should all be sunflower heroes, so lead by example and encourage them to create awareness in others, show empathy and make a real difference in all of the lives around them. Perhaps you could assist them in making a sunflower badge to wear to become a conversation starter for the topic, or get them clothing sharing awareness of scleroderma. Remind them that as long as we turn towards the sun, there will always be light.