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“Doctors have become much better at managing each of the symptoms [though],” she said.
Unlike other health conditions, which may come with common and easily identifiable symptoms, “the tricky part of scleroderma is that everyone’s different, and it can present in so many different ways”, Ms Lawrie-Jones says.
“Sometimes it can be changes to the skin, including thickening and hardening,” she added. “It may also present with internal issues, as mentioned, with the heart, gastrointestinal tract and lungs.”
One way to identify that something might be up is through a ‘pinch test’, she points out.
“If you can’t lift or pinch the skin, this is a sign of the thickening or hardening [associated with] scleroderma,”
Ms Lawrie-Jones said.
Due to its complexity, scleroderma is difficult to diagnose because “many of the symptoms can appear to be due to other conditions”.
“A doctor will assess a combination
of things, such as medical history and past and present symptoms, as well
as doing a thorough physical exam,”
Ms Lawrie-Jones said. “There are options such as skin biopsies as well as other tests, including blood [tests], which
will detect different antibodies such as ANAs (anti-nuclear antibodies). Anti- Scl-70 [antibodies] are more frequently associated with diffuse scleroderma, whereas anti-centromere [antibodies] usually occur in limited scleroderma.”
As mentioned, scleroderma often has a big impact on the sufferer’s quality of life, affecting activities of daily living and, in some instances, the ability to work. Ms Lawrie-Jones adds that “one of the most common issues with scleroderma is fatigue”.
“Apart from the medical and physical impacts on quality of life, the fatigue can sometimes cause the additional barrier to community participation and sometimes social isolation,” she said. “Members
of our community often comment that friends may stop asking them to social
functions, due to [frequently] needing to decline invitations from their lack of energy.
“Mobility can also be a factor on quality of life. Due to joint contractures in either the hands or feet, as well as tightening
of the skin on the face, it can cause the basic daily life activities to become a challenge. This can limit everyday chores, such as cooking, cleaning, getting dressed and even brushing your teeth.”
Another issue often reported by those living with scleroderma is the inability to maintain regular temperature.
“People with scleroderma also feel the cold more than others,” Ms Lawrie-Jones said. “This can also impact on their social activities during winter or [on] cold days.”
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,” Ms Lawrie- Jones advised. “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].”
“People with scleroderma may also not be able to stand for long periods and may need to sit to wait for prescriptions. Chairs with armrests may help [them] to get up from a seated position. There may also be barriers to holding a pen to
sign for the script, so be mindful when requesting this.”
Another issue to consider is forgetfulness when requesting these patients to recall items and instructions.
“Someone with scleroderma may also have ‘brain fog’ where sometimes they’re very forgetful,” Ms Lawrie-Jones said.
“It might be an idea to assist in printing all consumer medication information and mark or note any relevant information that might be needed.”
About Scleroderma Australia
Scleroderma Australia has been in operation since 2005, its aim being to “facilitate a national representative voice in supporting [the] scleroderma community across Australia”.
“Scleroderma Australia coordinates research projects, provides advocacy and awareness for scleroderma, and supports each state organisation,” Ms Lawrie- Jones said. “Each start organisation provides local community
support, such as local events
and fundraisers, coordinates
state group meetings and publishes newsletters.”
To promote awareness,
you can follow Scleroderma Australia on its social channels, or, for more information, visit: sclerodermaaustralia.com.au/
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. 4. Harvard Health Publishing, 2018. ‘Scleroderma’. health.harvard.edu/a_to_z/scleroderma-a-to-z [Accessed 8/6/20].
According to Harvard Health4, there are two types of scleroderma:
• Limited systemic sclerosis.
The skin is the primary target.
• Diffuse systemic sclerosis. The
skin is affected, as are the lungs, kidneys and other internal organs.
RETAIL PHARMACY ASSISTANTS • JUL 2020