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Shining the spotlight on scleroderma

It affects thousands of Australians, yet there’s limited awareness of scleroderma. Given that 29 June 2020 was World Scleroderma Day, in this month’s issue of Retail Pharmacy Assistants magazine we highlight the often-debilitating autoimmune condition.

Chances are you haven’t heard of scleroderma.

Sclero-what? I hear you say.

It’s an autoimmune condition affecting 6,000 Australians[1], profoundly reducing quality of life and the ability to work (studies show that scleroderma sufferers “on average, retire 15 years before their healthy population peers”[2]), and costing the community an estimated $64 million annually[3].

So, while other autoimmune issues continually make headlines, it’s time to shine the spotlight on scleroderma.

“Scleroderma, sometimes known as systemic sclerosis, is a connective tissue disorder and is classed as an autoimmune rheumatic condition,” says Scleroderma Australia President Amanda Lawrie-Jones.

“The way we like to describe it is by breaking down the Greek meaning of the word: ‘sclero’, meaning hard, and ‘derma’, meaning skin.”

Put simply, scleroderma is ‘hard skin’.

Ms Lawrie-Jones says hardening occurs when the body overproduces collagen.

“Collagen is the major protein portion of the connective tissue of the body, which is the tissue that holds the cells together,” she says.

“Collagen is found in the skin, joints, tendons and in parts of the internal organs [and is] made up of tiny fibres, which are woven together.”

Collagen overproduction can lead to the affected areas of the body becoming thick and hard, a phenomenon that interferes “with the normal functioning of those parts”, she says.

Given collagen’s significance in the body – without it the cells wouldn’t be held together – it makes sense that the issues with scleroderma are more perverse than simply affecting the skin.

“Scleroderma doesn’t only affect the skin,” Ms Lawrie-Jones said. “It can also cause serious damage to the lungs, heart, kidneys, oesophagus and gastrointestinal tract.”

This is why scleroderma is also sometimes referred to as “a multisystem condition”, one that “can vary with symptoms from mild to life-threatening”.

Other effects of scleroderma

While scleroderma can significantly impact a sufferer physically, it may also have a big impact on the quality of life of someone affected by this condition.

Aside from the physical health effects, other issues associated with scleroderma also include:

  • Effects on activities of daily living and in some instances the ability to work.
  • Fatigue, which can sometimes be an additional barrier to community participation – it can lead to increased isolation.
  • Mobility issues can make daily tasks such as cooking, cleaning, getting dressed and even brushing your teeth challenging.

“People with scleroderma also feel the cold more than others,” says Ms Lawrie-Jones.

“This can also impact on their social activities during winter or [on] cold days.”

What a pharmacy assistant needs to know

One of the main things for a pharmacy assistant to consider when working with customers who may have scleroderma is to think about the daily tasks that sufferers may be limited in, such as opening a medicine bottle or swallowing large pills.

“Be mindful and provide options or ideas to lessen the impact,” advises Ms Lawrie-Jones.

“Providing some information on accessible products, such as adaptable dental floss and toothbrush items, or toothpaste that can be used without brushing, e.g., tooth mousse, [is important].”

To read the full feature as it appears in the July issue of Retail Pharmacy Assistants magazine, visit: rpassistants.com.au/magazines/

References: 

  1. ‘A systematic review of the epidemiology, disease characteristics and management of systemic sclerosis in Australian adults’. International J Rheum Dis, 2017; 20 (11): 1728-1750.
  2. ‘Early mortality in a multinational systemic sclerosis inception cohort’. Arthritis Rheumatol 2017; 69 (5): 1067-1077.
  3. ‘Quantifying the direct public health care cost of systemic sclerosis: A comprehensive data linkage study’. Medicine (Baltimore, US), 2017; 96 (48): e8503.
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