I have ectodermal dysplasia by George, 16

Sixteen-year-old George first came to Great Ormond Street Hospital (GOSH) as a toddler. He has ectodermal dysplasia (ED) – a rare genetic disorder that affects the function or development of the skin, hair, nails, teeth and sweat glands. He still visits GOSH regularly for check-ups.

“I was only very little, maybe two or three years old, when the first symptoms of my condition became evident. I was having nose bleeds and my parents kept finding small clumps of hair in the bath. Within three weeks it all fell out.

“They took me to my local hospital in Southend-on-Sea before I was referred to GOSH. It was then that I was diagnosed with ED.”

Living with my condition

George and his mum
George and his mum
“ED is not a single disorder but a group of closely related conditions. My variety is so rare there are only two people in the whole country who have been diagnosed with it and they don’t yet have a name for it.

“ED makes a difference to my daily life in a few ways. I have alopecia and my hair hasn’t grown back since it fell out when I was little. I only started to get a few hairs on my arms and legs midway through secondary school, and eyebrows are only a very recent addition.

“My body struggles to control its body temperature so I can easily overheat or get too cold. Because of this, migraines or passing out due to dehydration is a very real possibility. It means I have to be prepared for the day. If I left the house in a rush before school without a bottle of water then I could become ill. Similarly, in the winter I wear a huge number of layers to deal with the intense cold that my body feels.

“I also can’t grow regular teeth. When they do come through they tend to be joined together so look like much bigger teeth. I’ve got one or two adult teeth but I won’t get any more now.”

Help from GOSH

“I’ve been coming to Great Ormond Street Hospital for nearly my whole life. My earliest recollection is of the long train journeys from Southend-on-Sea and then my mum taking me to a museum or gallery afterwards.

“The hospital has done so much for me. From an early age I developed needle phobia, an acute fear of injections and needles due to the large number I was receiving. Thanks to counselling and the psychologists at the hospital, I’m starting to deal with this issue.

“GOSH has really helped with my confidence. At primary school I had a few problems, as children sometimes don’t understand how people can be different. However, the team at the hospital have taught me that not everyone will understand and that’s OK. School is so much better now and I’m doing a BTEC in performing arts at my local college.”

Looking to the future

George reading
“Now that I’m 16 I’ll soon be transferring from Great Ormond Street Hospital to Guy’s and St Thomas’. Initially I was very nervous, as I’ve become so familiar with the staff at the hospital. I was worried that the transition would be really difficult. However, I had an introductory meeting at the new hospital last year that has put my mind at ease.” 

“I’ve never known life without ED but I won’t let it rule my life. For example, just because it’s particularly hot or cold I’m not going to let that get in the way of seeing friends or family.

“In the future I’d love to be a theatre actor like Alex Kingston, who I really admire for her dedication towards the craft of acting. If not, then I’d like to be a drama teacher. Acting has had such a positive influence on my life and I’d like to pass that on to other people.”