Our new Trustee Elliot Dunster, shares his thoughts on how his mum inspired him to become a Trustee at SRUK
My mum is one of the 19,000 people in the UK who live with scleroderma. That’s why I’m so pleased to have been asked to become a trustee of SRUK as the only UK charity that works to improve the lives of people affected by Scleroderma and Raynaud’s
"There was a family story about the times I would spend obsessed with going up and down in the lift whilst I was visiting my mum in hospital. I must have been about four at the time, and this was the first time she’d spent a long period getting treatment for scleroderma.
In the decades that followed I have so many different memories of how my mum’s conditions – scleroderma, Raynaud’s and Lupus - impacted her life. From those times she was in pain from spending too long outside in the cold on fireworks night, to when she had her leg amputated just after her 50th birthday.
My mum is one of the 19,000 people in the UK who live with scleroderma. That’s why I’m so pleased to have been asked to become a trustee of SRUK as the only UK charity that works to improve the lives of people affected by Scleroderma and Raynaud’s.
June is Scleroderma Awareness Month, and SRUK has been doing some brilliant work increasing awareness of the signs and symptoms of scleroderma.
Recent Coverage highlighted the impact that COVID19 has had on scleroderma patients, with around 80% having suffered interrupted care as a result of the pandemic. The information and support provided by SRUK has been critical for many people, particularly those managing their condition for the first time.
The Government has made welcome commitments to improving early diagnosis and treatment of disease - including rare diseases. The Conservative Party Manifesto even makes an explicit reference to improving access to treatments for patients with autoimmune diseases.
With the UK’s Rare Disease Strategy published earlier this year and the NICE Methods Review underway, everyone at SRUK will be looking to see how the Government will deliver on these commitments.
There’s a huge amount for me to learn from the SRUK team and the other brilliant trustees. I hope I can bring some of my own experience to the table and am looking forward to getting stuck in."