Scleroderma Life Hacks
Living with scleroderma means facing challenges in everyday life. Those living with scleroderma share their experience of these difficulties – and how they fight back. Whether it’s dealing with the cold weather or making it simpler to do things in the kitchen, we hope these ‘life hacks’ help make life with scleroderma that little bit easier.
The collection of ‘life hacks’ is a series of short video clips that are part of the global ‘More Than Scleroderma’ initiative developed by Boehringer Ingelheim, with support from patient organisations. The initiative is raising awareness of this rare condition and providing information and resources to those affected by scleroderma. The life hacks videos can be found here.
Scleroderma Life Hacks: Marisol
Marisol enjoys doing a variety of activities, such as cooking, cleaning, knitting, and listening to music. By using everyday objects that can be found around her home Marisol is able to enjoy her hobbies and overcome the challenges scleroderma can bring.
Scleroderma Life Hacks: Lyna
A big part of Lyna’s life is going to work. Living with scleroderma over the years means she has made small changes to adapt her workplace to her needs.
Scleroderma Life Hacks: Alison
Scleroderma can cause physical changes to the body. For Alison, some of the biggest changes have been to her hands. Find out how she manages these changes.
Scleroderma Life Hacks: Ivana
Taking care of yourself is important but living with scleroderma can make it harder to do everyday activities. Watch as Ivana shares her hacks for looking after herself when managing her condition, with advice from LeiLani Kopp, a paramedical makeup artist.
Scleroderma Life Hacks: Stephanie
Scleroderma can impact a person’s mental wellbeing, and bring about physical health challenges too, such as reduced lung capacity. Find out the ways Stephanie helps manage these challenges, with help from singing coach, Lee Freeman.
Scleroderma Life Hacks: Natalie
Natalie lives with scleroderma while looking after her young children. In this video, she shares how she manages childcare and the challenges her condition brings.
Scleroderma Life Hacks: Joyce
Managing scleroderma and the busy holiday period can be tiring for people with this rare disease. Joyce shows us her ways of conserving her energy while still having fun.
Scleroderma Life Hacks: Edith
Edith lives with scleroderma which impacts her life - even when performing daily tasks in the kitchen. See how Edith faces these challenges.
Scleroderma Life Hacks: Annelise
Annelise lives with scleroderma. In this video she shares how she deals with the cold, something that can be very challenging for people who live with this rare autoimmune disease.
Scleroderma Life Hacks: Nathan
Living with scleroderma can also impact one's mental wellbeing and openly discussing this topic can be hard. MBACP Counsellor Nathan Burt discusses how to lift your overall sense of wellbeing.
About Scleroderma and Interstitial Lung Disease
Scleroderma, also known as systemic sclerosis, is a rare disease characterised by thickening and scarring of connective tissue throughout the body.1,2 It is estimated that up to 2.5 million people worldwide have scleroderma.3 Because scleroderma affects the connective tissue, symptoms can occur in any area of the body including the skin, muscles, blood vessels and internal organs, making it difficult to diagnose. The disease impacts four times as many women as men, and the onset of the disease typically occurs at a young age – between 25 and 55 years.4
Nearly all people with scleroderma have hardening and thickening of patches of skin. The disease also can cause scarring in the lungs, heart, and kidneys, which can be debilitating and may become life-threatening.1,2
Footnotes
1 Solomon JJ, Olson A L, Fischer A, et al. European Respiratory Update: Scleroderma lung disease. Eur.Respir. Rev. 2013; 22: 127, 6–19.
2 Denton CP, Khanna D. Systemic sclerosis. Lancet. 2017 Apr 13
3 University of Michigan Scleroderma Program. What is Scleroderma? Available at: www.med.umich.edu/scleroderma/patients/scleroderma.htm. Last accessed May 2020
4 Scleroderma Foundation. What is scleroderma? Available at: www.scleroderma.org/site/PageNavigator/patients_whatis.html. Last accessed May 2020
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