Tackling skin disease

When the British Skin Foundation (BSF) was founded in 1996, it was because there was a genuine need for an organisation that could tackle the problem of skin disease head on. Funding research is essential to what we do, and we believe understanding how a disease functions is crucial to finding a way to defeat it.

For a lot of people, skin disease doesn’t go beyond living with eczema as a child, acne as a teenager and reading about skin cancer during the summer. Yet the sheer scale of the problem is staggering. There are hundreds of conditions and diseases that affect sufferers in vastly different ways and at different stages of their lives. Granted that not all eight million people with a skin disease in the UK are struggling on a daily basis, bear in mind that four thousand people will die in 2012 because their skin, for whatever reason, refuses to function as it should.

Any charity that is involved in funding research like the BSF will know that research can be hugely expensive. Last year we awarded over £600,000 in research grants to a total of thirteen projects, and we’re on track to match that in 2012. However the truth remains that we can only afford to reward a quarter of all applications that we receive and we’d like to be able to fund a lot more.

Funding streams for research into skin diseases are limited in the UK. Aside from the British Skin Foundation and the Medical Research Council, there are only a handful of other charities such as Cancer Research UK who will fund research looking into the condition they are concerned with.

So where do people go to when their skin disease tightens its grip? We don’t offer any form of support - a charity that’s as small as us (five members of staff) means it simply isn’t feasible, but we’re well aware of how bad things can get. A survey we ran recently received some well-deserved attention in the press after we revealed almost half of the people with a skin disease we asked told us they had been victims of verbal abuse one or more times from another member of the public.

A further one in six people had self-harmed because of their skin disease, and seven people said they had attempted suicide. A further 17% (125 respondents) stated they had contemplated suicide at some stage. Judging by these findings, there’s clearly a way to go in terms of public awareness as well, not just about the diseases themselves and their symptoms, but how they can affect a person emotionally. 

The truth is that there are numerous conditions that can, in its most severe form, kill. At the end of last year we were approached by two parents who told me how they had spent the first seven months of their child’s life in hospital. The baby, which was born with a severe form of ichthyosis known as Netherton’s Syndrome, meant Friday nights were spent in the ward with a takeaway as a treat. Physically and emotionally draining, skin disease can and does put a huge strain on relationships, especially if the condition itself is not always fully understood.

Whilst misdiagnosis is hopefully something that occurs less and less as our knowledge of skin disease increases, it can be deeply unsettling for anyone faced with the issue. Put simply, we as a community don’t always know how to treat every single type of skin disease, which is why our charity still has a huge amount of work to do. 

To find out more about the British Skin Foundation visit www.britishskinfoundation.org.uk