Help us to raise awareness this World Scleroderma Day

Date: Tue 28th June 2016

Watch the official World Scleroderma Day video, June 29 2016.

Please share the video with your networks to help spread awareness of scleroderma today.

Today, you are invited to take a 'hand in hand' picture and share it with your network. You may be a patient, a family member, carer or friend

Don't forget to use the hashtags to see your picture appear on our social media wall: #handinhand #scleroderma #worldsclerodermaday #WSD16. Find out more about how to get involved on the World Scleroderma Day website.

This week welcomes World Scleroderma Day, raising awareness of scleroderma across the globe. Following recent research we know that there are many people living in the UK who are unaware of Scleroderma and Raynaud's that may be living with one or both of the conditions.

From our research we saw how important it was to increase awareness and understanding of both Scleroderma and Raynaud's in order to ensure more people seek medical help when needed.

While only a small number of patients with Raynaud's go on to develop a more serious connective tissue disease, scleroderma (which can cause disability and can be life-threatening), it is important to pick this up early, so that any complications of the condition can be properly treated.

We know that for many people Raynaud's is the first sign of scleroderma and so this month we have been encouraging everyone to know the signs and symptoms to look out for and when they should go to see their GP.

We currently support over twenty two thousand people in the UK living with the conditions but this is just the tip of the iceberg. As a result, we are now running a campaign to help people to get to #KnowRaynauds.

Despite a quarter of people saying that they had experienced one or more of these most common symptoms repeatedly, only 10% on average have visited their GP about this.

Sue Farrington, Chief Executive of SRUK, says:

“We know that many people do ignore the symptoms and just get on with life, not knowing they have Raynaud's nor that treatment is available in many cases to help people cope with the painful and sometimes life-changing effects of the condition.

"Beyond a lack of awareness, our research also shows stigma and misunderstanding around Raynaud's and Scleroderma, with many people saying they would be embarrassed to admit they had the conditions, that they would be worried they would pass it on and that they wouldn't know how to get help or support. This needs to change – Raynaud's can be a minor but uncomfortable inconvenience, but for those more seriously affected by Raynaud's or Scleroderma, it's crucial that they seek medical treatment and support as early as possible."

Please help us improve the awareness of Scleroderma and Raynaud's by sharing your experiences using #KnowRaynauds.

Raising awareness with Health Professionals

This month we have been charity of the month with Unite/CPHVA. We have been raising awareness of Scleroderma and Raynaud's amongst community practitioners and health visitors. We have produced an 8 page briefing talking about the conditions, the signs to look out for and how the charity can support practitioners and people affected. Sue Farrington took part in a webinar with Jane Beach and Helen Bird to talk more about the conditions and we took part in a Twitter Tuesday taking questions from Unite/CPHVA community and discussing how to spot the signs and what to do next. Find out more about our work with Unite/CPHVA.

Press features this month: