Systemic sclerosis, a chronic disease, has unfortunately become part of our everyday life since my wife Estelle showed symptoms in 2018 and was then diagnosed with the condition in late 2020. This condition has hugely impacted our family life. Many simple tasks and every day activities that we often take for granted have now become very difficult or in some cases impossible for Estelle. Currently this rare disease, which affects around 19,000 people in the UK, is incurable and can only be managed through drugs, therapies, help and support.

The condition itself is quite complex, in which the immune system becomes over-active and begins to target healthy cells. Most commonly affecting the skin, the digestive system, but also the heart, lungs, and kidneys. As the condition has progressed, Estelle’s routine consists of having to take at least 18 condition specific medications throughout the day, often to be topped up with regular pain relief. She deals with breathlessness, fatigue, low body temperature and muscular pains daily, making her everyday job and social life a challenge.

Estelle was introduced to SRUK in 2019. Since then, she has joined a community of others who suffer with this condition in a hope that collectively through drug trials and collaboration, a greater understanding and a wider support network will help other families affected.

SRUK is the charity that supports us as a family. They provide us with help and advice on how to best cope with the condition, offering support and awareness through seminars and community groups.

In 2022/2023 I will be setting myself some physical challenges to help raise money for SRUK to help them in their continued support for many families like ours. This year I have set myself 4 challenges, building up to and including the Virgin Money London Marathon in October .

My Challenges are 

Pendle way in a day this February - an ultra marathon 45 mile cross country run/walk.

Liverpool -Leeds canal bike ride 127 miles  in a day

Coast to coast Whitehaven - Tynemouth bike ride over two days  140miles  tis Challenge was done in August 2023

and finally the London Marathon in October  2022

Please join us in raising some much needed funds so that other families like ours can get the help and support they need and to also help SRUK continue to raise awareness about this very rare and complex condition. Any donations no matter the value would be greatly appreciated. 

From Estelle, Myself  our children Arron and Emma, we thank you. 

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