|Black and White photograph of Melissa showing her head and shoulders.|
My name is Melissa Smith, and I'm a twenty-four year old English post-grad student, who loves all things decadent. I'm a fledging blogger, and I generally love writing, whether articles, stories or complaint letters to hospitals (they're the most fun!). When my body permits, I enjoy gigging with friends, shopping, visiting galleries, travelling and playing with my mad little dog, who completely ignores my disability and treats me like she does everyone else. If only all people could be like that!
On Sunday (21st November) at 4.35pm, BBC One is showing their monthly Lifeline appeal show, which highlights charities working to support people in the UK and abroad. This month’s show is particularly close to my heart, as the featured charity is DebRA UK, who support people with and fund research into treatments for, a genetic skin disease called Epidermolysis Bullosa (EB).
I was born with EB (of the Recessive Dystrophic sub-type) twenty-four years, and the best way I can describe its symptoms is waking up each morning with fresh second and third degree burns, and developing more throughout the day. The simplest of tasks can damage my skin, causing it to form fluid-filled sacs masquerading as blisters, or my skin will just lift off completely, leaving a raw wound. In my type of EB, this is caused by a deficiency of a protein called Collagen VII, which acts as a glue holding the layers of skin together. I have very little Collagen VII, and what I do have doesn’t work as it should. EB affects the entirety of my outer body, as well as my mouth, oesophagus, nostrils, eyeballs and inner ears. It has caused my fingers and toes to fuse and contract, limiting my dexterity and balance, and the blistering and nerve damage to my feet means I am usually reliant on a wheelchair. I am also reliant on my family, especially my mum, who is my official carer.
But that isn’t as bad as EB gets, not by a long way. I’ve seen friends of mine, with the same type, almost paralysed by the wounds and scarring, unable to straighten their legs or even sit up. I’ve lost twenty-five friends to EB, with complications including massive infections, heart failure, kidney failure, malnutrition, and most commonly, skin cancer (people with my type of EB are 70% more likely to develop a squamous cell carcinoma, and our bodies’ are often unable to prevent it spreading). Then there is Junctional EB, and it is one of the worst illnesses conceivable. Imagine thinking a new baby is teething, and realising that their gums are actually disintegrating, or having to give a child so much Morphine to make your touch bearable that they don’t recognise you any more, or watching your baby’s skin wipe off on their pillow, just because they turned their head. That is Junctional EB, and even Stephen King couldn’t dream it up.
But despite all of this, because of DEBRA, we have hope. They fund specialist adult and paediatric nurses who travel the UK giving home visits, and advising medics in hospitals; they buy equipment needed by EB patients in the hospitals that the NHS won’t pay for; they advise patients and their families on how to claim benefits, and fight the corner of those who are being challenged; and, last but by no means least, they fund research into treatments and cures for EB. For my family and me DEBRA have been like a recovery service – picking us up, sorting us out, and getting us on the road again. They supported us when our local authority said I couldn’t attend mainstream school, with our Director running rings around the officious idiot from the council, and since then they’ve encouraged us to believe that nothing is out of reach. They have done everything to support me, and now I want to return the favour. Especially as I’ve been a Trustee for the past few years!
I’m not asking you to watch the appeal in the hope that you will make a donation. I know all too well how tight money is for everyone who relies on the benefit system, and how uncertain the future is. I’m asking that you watch to learn about our little known disease, and how it affects our lives. So many people think of skin conditions as itchy rashes and minor problems, but EB kills on a far too regular basis. I don’t care for myself, I just desperately don’t want EB children to be bullied and to be stigmatised like I was. And I want them to have futures free of bandages and blisters. So if you could tune in, and ask your family and friends to watch too, I would be eternally grateful.
Thanks, love Melissa
Info link: DEBRA
Note from BendyGirl: Whilst my friend Melissa is too nice to ask you to donate to DEBRA, I have no such scruples! Money is tight for us all, but if enough of us donate just a few pence it'll make a huge difference. Donate to DEBRA here