DEBRA

Post: DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, RG45 6LS.

Text: Text SKIN11 £10 to 70070 to donate £10

Online: www.justgiving.com/DEBRALifeline

Phone: 01344 771 961

A child born with EB is mostly a complete shock to parents. I can only imagine what it was like for my parents to see me born. My dad saw my veins through a large blister on my leg and the doctors came to both Mum and Dad and said “we don’t know what it is”. I cannot imagine how frightened they were. I can happily say I don’t remember any of what I went through as a baby and toddler, but for my parents and big brother, they have some terrible memories.

Thankfully through DEBRA, parents can have much needed support as soon as a baby is diagnosed, from help with much needed benefits, necessary equipment for the special needs of a child with EB and emotional support through specialist trained staff. If it weren’t for the nurses, I’d have died aged just 14. I am 31 now, and have survived a cancerous tumour on my ankle due to EB – and that was all thanks to the excellent specialists DEBRA help to provide. My DEBRA social worker is able to provide funds to and from hospital when necessary and this relieves much stress on everyone.

There are so many strains of EB and so many horrifying problems that come with the condition that can appear instantaneously, without DEBRA it would be so simple to give up hope. Pioneering research has led to a greater understanding about the missing protein in the faulty gene, and this is the closest we have got to stopping the trauma EB does. Without funding for research, through DEBRA, all the hard work done so far would count for nothing. But DEBRA help people like me live with EB, support us where necessary to lead a relatively normal life. The skin is the largest organ of the body, and you wouldn’t think it would cause so much grief. But it does.

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At least 5,000 people in the UK live with the painful genetic skin blistering condition Epidermolysis Bullosa (EB), a currently incurable condition which causes the skin to blister and tear at the slightest touch. In its most severe forms EB is fatal. Even in its least severe forms it can still cause lifelong disability and pain. Blisters often have to be drained and dressed every day – a painful procedure which can take several hours.

DEBRA is the national charity that supports individuals and families affected by EB. DEBRA focuses its work in two areas; it funds pioneering research to find effective treatments and, ultimately, a cure for EB and until that day provides specialist care and support to individuals and families currently living with EB.

Your donation will enable DEBRA to continue to provide an enhanced EB Healthcare Service to deliver optimal healthcare to children and adults living with EB, including bereavement support, podiatrists, dieticians and multi-disciplinary EB outreach clinics for people unable to travel to the main EB centres. It will also provide funding for community support staff to work directly with members, for example visiting them at home to conduct a full benefits review to assess the financial support that may be available. As well as this, your support will help DEBRA to provide grants for essential goods and services to assist families with the day-to-day difficulties of living with EB, it will provide respite in the form of days out and it will give families the opportunity to have a holiday in a specially adapted holiday home.

You will also provide real hope for the future by funding pioneering research which will one day find a cure for this cruel condition. Thank you!

For more information, please visit www.debra.org.uk, www.facebook.com/DEBRACharity, www.twitter.com/@CharityDEBRA or telephone 01344 771961.

Jenna couldn’t wait for the arrival of her second child. After having a difficult pregnancy, it was a relief to her, that the labour and birth of Freddie Algate was a safe and straightforward one. Unbeknown to Jenna, Freddie was born with EB. 

Jenna said, “My labour was brilliant; everything was perfect to that moment when he was born… The atmosphere completely changed in the room everyone’s face when white and you could see that something was wrong.”

It was a tough time for everyone concerned but none more so than for Freddie who was battling the pain, sores and infections that EB brings.

She said, “You could see he was in agony. He tried to feed, and he tried to, sleep like a normal baby, but you could see he barely slept because of the pain.”

Taking Freddie home and caring for his EB was a scary prospect for Jenna and so she was thankful that a charity like DEBRA existed. With the help of DEBRA, Jenna has been able to ensure that the environment Freddie lives in, suits his needs and when things get too much for Jenna, she knows that her DEBRA Community Support Manager is there to offer support.

She said, “I do have difficult days. To the point where I do need a phone call. Miranda’s been my absolute world in all of this.”

Mother of two Toni knows all too well the pain and distress that a child with EB goes through. She has cared for her son Josh, who has the condition for the last 11 years. As well as maintaining his skin condition, Toni supports Josh emotionally when times get tough.

Toni said, “Josh does have down days. And, you know, we do get the “why me?” Ummm, “it’s not fair, I’m fed up of this”.

Now that Josh is getting older, the physical element of the condition is making what should be a person gaining independence, become a lot more difficult. 

Josh said, “The most frustrating thing about it is that I can’t really go out and play with my mates after school. The slightest bit of friction could cause a blister or my skin to peel off. “

With all of the stresses of having EB, it’s been a huge relief that DEBRA offer services such as the multi-disciplinary clinics to make Josh’s life a little easier. And to ensure that the Guild’s have an opportunity to have spend quality time as a family, they’ve made use of the DEBRA holidays, that ensure that going away is made easy for people with EB.

Toni said, “The DEBRA holiday that we had was hassle-free, it was an adapted caravan so we didn’t have to worry about wheelchair access, it was just a good family time.”