Bott & Co have raised and donated over £35,000 to various charities including DEBRA, and in this interview we find out what businesses and supporters can do to help find a cure for this painful disorder.
What is Epidermolysis Bullosa (EB) and how many types of the disease are there?
EB is a rare genetic condition which causes the skin to blister and shear at the slightest touch. There are three main types of EB – Simplex, Junctional and Dystrophic. Simplex is the mildest type, however, I use that term loosely because if I had one blister every day of my life I would not call it mild, but compared to the other types it is. Those sufferers can expect a normal life-span, but it will not be without pain and possibly disability – Simplex sufferers will mainly get blisters on their hands and feet.
In its worst form Junctional EB is fatal in infancy. Most children take morphine for the pain which gives you some idea of how terrible the condition is.
The charity is celebrating its 35th anniversary this year, what are the main challenges over the next 35 years?
We are indeed celebrating 35 years this year, I find it hard to celebrate 35 years when we don’t yet have a cure, but we are making great advances in research towards treatments, we have a community support team, holiday homes for respite care and we spend our money very wisely. What we do need is more support, more companies and individuals bringing in money to help families with EB and that is ultimately the main challenge – awareness and funding.
We are in tough times with benefits being cut, and with children with EB often at least one parent cannot work because looking after the child involves round the clock care.
Do the government fund any aspect of the charity?
We work in partnership with the NHS to provide an enhanced specialist EB Nursing Service to deliver optimal healthcare to children and adults living with EB. But, like many charities DEBRA receives no government funding so we rely on the generosity of the general public and a dedicated team to go the extra mile to raise awareness and money.
What is the typical day in the life of a child living with EB like?
In one of our leaflets it shows a day in the life of Maisy, who is eight years old and living with Recessive Dystrophic Epidermolysis Bullosa. It takes three hours just to dress the wounds and get Maisy ready for the day and the pain she goes through, like many other children with EB, is heart breaking.
A typical day in the life of a parent whose child is living with EB would be draining and dressing blisters, and witnessing the pain that they put their child through. But unfortunately it has to be done – it must be a terrible ordeal to put the child through.
DEBRA held a gala ball on October 12th, how well attended are such events and what role do they play in supporting the work you do?
The Manchester Gala Ball is in its eighth year now. When it launched we struggled to sell tickets as people didn’t know who or what we were about – we struggled to get 185 people sat down eight years ago, but now we have many more. Although we still need to get people to come along as we want around 400 people attending each gala ball over the next two years. It’s a great night with lots of entertainment, moving stories and a fantastic meal; we like to invite families of those with EB to show them what we are doing and also to give them a little break.
Businesses can come on board to help and support us, it isn’t just about them giving us money – it’s also about raising awareness and getting our brand out there. Anything businesses can do is very much appreciated.
At the ball held last month we raised £11,000 which will help many families living with EB by means of community support grants and respite care.
You can read more about DEBRA by visiting www.debra.org.uk.
The post In Conversation with DEBRA – A charity dedicated to finding a cure for EB appeared first on Bott & Co.
