Scleroderma and Raynaud’s affects millions of people worldwide, yet these individuals often remain undiagnosed or are left to deal with the impact of the conditions alone. Now, Scleroderma and Raynaud’s UK (SRUK) are calling on everyone to unite and create a world where there is much greater awareness and understanding of these conditions and their impact.
Scleroderma is a chronic disease of the immune system, blood vessels and connective tissue, which falls under the rheumatic and musculoskeletal disease umbrella. Approximately 2.5 million people around the world have scleroderma, with around 12,000 in the UK who are diagnosed with the condition. It is an autoimmune condition, meaning the immune system becomes overactive and attacks healthy tissue in the body.
Scleroderma derives from the Greek, ‘sclero‘ for hard, and ‘derma‘ for skin. This hardening of the skin can be one of the first noticeable symptoms of the condition, as the body produces too much collagen. The excess collagen can affect the skin, joints, tendons and internal organs by causing scarring. This can prevented the affected parts of the body from functioning normally.
Raynaud’s phenomenon is a common condition thought to affect up to ten million people in the UK. In people who have Raynaud’s, the small blood vessels in the extremities (including the fingers, toes, ears and nose) are oversensitive to temperature changes. This causes a Raynaud’s attack, where the fingers sometimes change colour, but not always, from white, to blue, to red. A Raynaud’s attack can be an uncomfortable and painful experience. It can also make everyday tasks that most of take for granted very difficult.
Meet Scleroderma and Raynaud’s UK
Scleroderma & Raynaud’s UK (SRUK) are the only charity in the UK dedicated to improving the lives of people with scleroderma and Raynaud’s phenomenon. Their aim is to support those living with these conditions, as well as improving awareness and understanding of both scleroderma and Raynaud’s phenomenon. There are lots of ways you can get involved in raising awareness of these conditions, and one way you can do so is by joining #RaiseYourHands during February – the official Raynaud’s awareness month.
Share your quotes, stories, photos and short videos on social media and show others what life is like with Raynaud’s phenomenon.
SRUK would like you to write, photograph or film your experiences with Raynaud’s. It may be about how the condition affects you or a short film showing you trying to complete a task that you find difficult. SRUK want to make everyone aware of how Raynaud’s impacts every day life by sharing your thoughts and experiences on social media with the hashtag #raiseyourhands.
Here’s a simple guide from SRUK to joining the campaign:
- Write it, photograph it or film it using your mobile phone. It could be a picture, video or text about your Raynaud’s experiences. Your experiences could include your diagnosis or treatment, or how you’ve managed at home, at work or at school.
- Share your story on Twitter with #RaiseYourHands and tag @WeAreSRUK.
- Share your story on Facebook using ‘I am raising my hands because… Support Raynaud’s awareness month and #RaiseYourHands’. Don’t forget to tag @WeAreSRUK! For example, ‘I’m raising my hands because even a trip to the supermarket can leave me with painful fingers. Support Raynaud’s Awareness Month and #RaiseYourHands’.
- Share other people’s #RaiseYourHands posts to help spread the word about Raynaud’s.
- Email your story to firstname.lastname@example.org with the title ‘My Story‘.
For further information about scleroderma and Raynaud’s, please visit: www.sruk.co.uk. I also couldn’t write a blog about scleroderma and Raynaud’s without mentioning the talented and inspirational Nicola, who has built upon her own lived experiences of scleroderma and Raynaud’s to advocate for the entire community of people living with these conditions. Please check out her blog: www.cosmicfairy444.blogspot.co.uk.
Source: Scleroderma & Raynaud’s UK, Cosmic Fairy 444