What is scleroderma
An introduction to this challenging condition
The 31st of March 2016 marked the official launch of Scleroderma & Raynaud's UK, the organisation formed after the merge of Raynaud's & Scleroderma Association and Scleroderma Society. The collaboration of the two charities combines expertise and passion from two different sources which will aid in helping SRUK to further support people with Scleroderma and Raynaud's and build awareness whilst trying to fundraise for research into the conditions.
An example of the fundraising that SRUK carries out is the afternoon tea organised by Yun Wah Wan at the Pick's Organic Farm in Leicestershire. Held on the 23rd of April in celebration of the merge of the two charities, guests travelled from around the UK to lend their support to the newly formed SRUK. Attended by many of Yun Wah's close friends and relatives as well as long-time members of Raynaud's & Scleroderma Association and Scleroderma Society, the event was a success as the weather remained sunny and clear setting an amicable atmosphere for an afternoon of tea, cake and prosecco.
The proceedings were kicked off by a talk from Kim Fligelstone, a very special guest whose life has been affected by scleroderma and is a volunteer on the SRUK helpline. Kim was kind enough to speak to me as a patient representative about her experience with scleroderma.
Kim discussed the disadvantages of the rarity of scleroderma and the importance of raising awareness for the condition. 'It is a disadvantage because some people might be diagnosed late, and as with all conditions but especially scleroderma, because it is so diverse and can affect people in such different ways, an early diagnosis and early treatment can stop the disease from progressing.'
Touching on the topic of an early diagnosis, Kim then explained her own story about her diagnosis and the early signs of scleroderma which affected her. 'I was 29 and I thought that I was getting old. I suddenly started finding it difficult to walk up and down the stairs and the short walk from work to the tube station, which should've taken me ten minutes, was taking me up to forty minutes. Then I couldn't put any weight on my arms and I was waking up in the middle of the night with pins and needles. I went to the doctors and was incredibly lucky as I was diagnosed within six months and I think that's very rare.'
Speaking to Kim about the length of the diagnosis process, I was shocked to discover that Kim has heard of people who are thought to have had scleroderma, 'for five or ten years before they've been given the diagnosis.' The unification of the two charities to form SRUK aims to raise crucial awareness which can then potentially help prevent late diagnosis.
Yun Wah's afternoon tea raised an incredible £400 and was matched by the local business Lotan Ltd, the manufacturers of food containers, which will be shared between SRUK and Scleroderma Research at the Royal Free Hospital. This was the fifth event which Yun Wah has organised in order to raise money for the charities and it was all possible due to the support of friends and family who kindly donated through raffle prizes, donations and other contributions. As well as Kim, who has been a guest speaker before, Marilyn York who is the local contact for the Hertfordshire group has always been encouraging and supportive of these events. The kindness and generosity of all involved will contribute to supporting those who have been affected with Scleroderma and Raynaud's.
Alex Wan is an up and coming young writer having already demonstrated her literacy skills by winning a Leicester Mercury writing competition in 2013 where her entry was published in the local newspaper. She is currently studying English and Creative Writing at Manchester Metropolitan University and posts on her blog (alwa.co.uk) in her spare time.