AS a child, Laverne Inns, now vice-principal of Tandragee Junior High School, suffered from very sensitive skin on her hands and feet, but it was only 10 years ago that she discovered she has a very mild form of what can be a very distressing condition.
Epidermolysis Bullosa (EB) is a genetic skin blistering condition in which the skin breaks at the slightest rub or knock resulting in raw, open wounds. In the most severe types, almost the entire body is affected and the wounds heal very slowly leading to pain and disability.
Since receiving her diagnosis and realising just how fortunate she is, Laverne has been supporting the charity DebRA, which helps families affected by the disease, and has just signed up for her latest challenge to run a half marathon in Geneva.
The marathon will be held at the beginning of May and pupils at Tandragee JHS have already taken the cause on board, organising a Dessert Day for DebRA when they will be selling mouth-watering sweets.
Laverne, who teaches French and Spanish and has been vice-principal for six years, is in charge of the school’s charity committee and is also an active sportswoman, taking the children for hockey.
Despite EB affecting her hands and feet, she is also the school’s hill walking leader and has taken various groups of children up the Mourne Mountains for a day’s hiking.
She explained, “The condition is worse when your skin sweats so wearing heavy, warm socks and hiking boots is not ideal. My heels can be white and raw when I come down, and it can take a week or two for new skin to grow and for them to heal.
“I just have to be very careful as my skin is not as strong as everyone else’s. I always wear comfortable shoes and gardening is difficult as my hands just go into blisters.”
Both Laverne and her younger sister Rhonda have EB Simplex, the mildest form of the condition, and she recalls how, as children, they always got blisters on their heels when they put on their hard, school shoes after the summer holidays.
However, Laverne points out that her condition is so mild it does not affect her ability to lead a normal life. She is a member of Banbridge Athletics Club and enjoys running, aerobics and swimming.
This will be her second marathon for DebRA. In 2004, she completed the London Marathon, raising around £2,000, after a TV programme ‘The Boy Whose Skin Fell off’, brought the condition into the public arena.
And in a recent episode or the medical drama Holby City, EB was the storyline, with the title ‘Butterflies’ referring to the term given to young children with the disease, due to their skin being as fragile as a butterfly’s wing.
Little Isla, pictured, is just one of the children featured on the charity’s website. She suffers from Recessive Dystrophic EB and, now aged two-and-a-half, is having difficulty running around like other children. She also has difficulty swallowing as the internal linings of her throat have repeatedly blistered and healed.
Laverne, who lives in Banbridge, will be holding collections in the town and also hopes to organise a fundraising event at Tandragee Junior High School.
She said, “I think it is time for me to give something back. The children and parents here are always very generous and I want to lead by example. This is a very worthwhile cause and any donation, no matter how small, will be gratefully received.”
Money is used by the charity to fund research into the cause and treatment of the disease and to provide nursing services and support for sufferers and their families.
Donations can be made via the school or the website www.justgiving.com/Laverne-inns.
For more information go to www.debra.org.uk