About

This summer, the RECORDER team are walking for Scleroderma and Raynaud's UK (SRUK). 

RECORDER uses health data science and large-scale data to improve the lives of people with rare autoimmune rheumatic diseases such as scleroderma. Whilst we all work on the research in some way, many of us aren't medical, and so don't see people affected by these rare conditions very often. Through this event we are raising awareness in others, but also broadening our own understanding of what it is to live with scleroderma and/or Raynaud's phenomenon.

Here are some facts about scleroderma and Raynaud’s to help explain why the work we do, and that of SRUK, is important:

You may have already heard of Raynaud’s, which usually affects people’s finger and toes. They may change colour, feel painful and/or numb. It occurs when blood vessels go into a temporary spasm, which blocks the flow of blood.  It is usually triggered by cold temperatures, anxiety, or stress. Symptoms of Raynaud’s can last from a few minutes to several hours.

Did you know it can affect the nose, ears, lips and even nipples? There are lots of things you can do to manage any symptoms of Raynaud’s, including wearing warm clothes, not smoking, exercising regularly, and eating a well-balanced diet. However, for some it can be very debilitating, or a sign of something more serious, like scleroderma. The NHS website has guidance on when to consider seeing your GP about it.

You’re less likely to have heard of scleroderma, which causes thickening of the skin and sometimes problems with other tissues and internal organs. Some types get better, but some types can be serious, even life-threatening. It's an overreaction by the immune system, and whilst it can’t be cured, treatments are available to help with symptoms and prevent it getting worse.

SRUK work to improve the lives of everyone affected by scleroderma and Raynaud's. They provide information and a helpline that's open all year round. Please support our fundraising efforts because together we can increase awareness of these conditions and fund life-changing research and support. Every donation will make a difference, thank you.