"When Debbie was first diagnosed, we had never heard of scleroderma"

Robert remembers his wife Debbie who died from scleroderma aged 46.  Here, Robert tells us why fundraising and improving awareness in memory of Debbie has been so important. 

Debbie died from scleroderma on 16^thOctober 2019 – she was my wife, my soulmate, and my best friend - every day I miss her so much.  She brought a light to everyone she worked with and to all her friends.   

When Debbie was first diagnosed, we had never heard of scleroderma – but it is such an awful disease and not nearly enough is known about it.  The condition attacked Debbie’s lungs and it quickly destroyed her body – taking her away from me piece by piece. 

I want to share Debbie’s story as much as I can to raise awareness about the devastating impact of scleroderma and to help fight for better treatments.  I believe more people should know about the condition and I have even been on local radio talking about it.   Debbie was so kind and loving, the sort of person that would give you her last penny - raising awareness in her memory feels right to me and I know she would approve.

At Debbie’s funeral I was able to raise £1,600 for SRUK which meant so much.  Honoring Debbie’s memory in this way and knowing the funds are going to a charity like SRUK is some comfort.  SRUK works hard supporting people living with scleroderma, but they also invest in vital medical research – it is my wish that better treatments in the future will mean someone living with scleroderma will not lose their life in the way Debbie did.   

If you have a personal story you would like to share please get in touch with us.  Contact us on 020 3893 5993 or by email: fundraising@sruk.co.uk