Heather's story
"Most people react to my EB by pointing and staring although some sensibly do ask. Some ask my Mum despite the fact that I'm grown up now, they treat me as though I can't answer!" Heather.
"I try and lead as normal a life as possible but the degree to which you can do this does depend on your EB, on the whole I think I do quite well!
"I have Recessive Dystrophic EB which mainly affects my back and neck but really it affects my whole body, inside and out. I have a restricted oesophagus and can only eat small amounts of food, so to make sure I get enough nourishment I plug a pump into a Gastrostomy button fitted on my stomach each night and the pump delivers ‘food' into my body. I also take pain relief at night so I usually get a reasonable amount of sleep.
"Each morning I unplug my pump, get dressed and put on my makeup and then I drive myself to college! It's great to have this independence but I never take it for granted. My EB can cause blistering in my eyes and every 3 months I have to go to Moorfields Eye Hospital. I couldn't drive for two years as I had a very serious eye infection which caused the loss of the cornea and lens in my right eye. I was so lucky because my wonderful consultant, Mr Nischal and his team, managed to restore my sight using a contact lens and this allowed me to drive again.
"I'm studying BTEC Software Development and Web Design at college and I work there part-time on Saturday morning as a receptionist. I have a motorised wheelchair which helps me get around and I like to keep busy. I have quite a lot of hobbies including jewellery making, dolls house decorating, driving, cinema, theatre, going for girls' nights out and eating in restaurants.
"I try not to let my EB restrict my life, but lancing my blisters and changing the dressings is difficult. Mum works full time as a teacher, so we've always needed help from family and friends. Lorraine has been my carer and helper for years. She's great and is one of the family now, she helped me right through my years at school and assists me at college too. DebRA has helped us quite a lot and I got to know a friend through the charity. We have helped with fundraising and I appeared in the BBC Lifeline Appeal and helped with the launch of The Butterfly Children campaign.
"So my day ends with changing all my dressings - this can be quite painful and difficult, particularly when I'm tired from the day, but I try and relax and then have a hot bath. I call this a monkey bath because it makes me go ‘ooo' ‘ooo' ‘aa' ‘aa' when I get in it! Then it's more pain relief to help me sleep and I plug in the pump so I'm ready for another day tomorrow."