TWENTY-one-year-old Myra Ali is not much different to others her age.
She enjoys going out with friends, visiting the cinema and will soon start her third year of studying History at Birmingham University. Just like with any other woman in her twenties it takes a long time in the morning until she’s ready for the day, but not for the reasons you might think.
Myra, from St Alphege, was born with dystrophic EB (Epodermolysis Bullosa), a condition that causes her skin to blister at the slightest touch. Every morning she gets up at 6 or 7am, because it takes her about an hour to have a bath and another hour to change her bandages. A nurse visits her at home every other day to help with the bandaging while her grandmother is always there to offer a helping hand.
Before bed she has to put cream on her eyes as she cannot shut them properly and take painkillers to help her go to sleep.
“None of my parents ever had EB,” said Myra. “They were completely shocked when they found out. As a newborn I was constantly in hospital.”
Seven years later her brother Qassim was also born with the rare genetic condition.
As a result of the constant blistering and scarring of her skin, Myra’s fingers have fused making her hands very difficult to use. In June she had surgery done in order to separate the fingers on her left hand. Being given only local anaesthetics she was awake during the whole of the procedure and even though it left her with a splint which is very painful to wear, Myra is pleased with the result and hopes to have another operation on her right hand next year.
Myra refuses to let the condition take over her life. She loves fashion and though she knows she should wear clothes that are as comfortable as possible she loves shopping and doesn’t mind paying a bit more for her clothes in high end stores if necessary.
Next month she will be attending a gala ball organised by DebRA, a charity that supports EB sufferers and funds nursing support. Fortunately she has already bought the perfect dress.
The fund-raising ball will take place on September 19 at St John’s Hotel. Tickets are still available from 07786 575 512 or firstname.lastname@example.org.