Diagnosed Age 11


Hayley age 10At 2 years old I suffered with Pneumococcal Meningitis and was given 48 hours to live. Luckily I responded to antibiotics and survived. Since then I’ve encountered problems with disliking loud noises and bright lights and had an unstable bladder as a child, this now means I still get frequent urine infections as an adult. Still we are not sure if any of these are linked to Gorham’s in any way.


It all started when i was 6 during a check-up at the dentist, it was found that my teeth on the lower left hand side were all loose. I was referred to the maxillofacial team under Consultant Steve Watt-Smith at The John Radcliffe hospital in Oxford. I had loads of tests done one of which was a biopsy taken from the roof of my mouth which later resulted in 2 haemorrhages where I lost a lot of blood therefore needing blood transfusions and an operation to stop the bleeding, before it was diagnosed as Gorham’s, which was when I was about 11 years old.


Mybirthdayinhospital_compressedI have it in the left side of my face which then continued to the back of my skull only 2cms away from my spine. At that point it was life threatening, but being only 13 at the time my parents couldn’t tell me that I could die from it.


I had chemotherapy and calcitonin injections, which is thought to have stopped it from spreading. It was then found that my jaw bone was only 2mm thick and had broken. I had to have a major operation to reconstruct my jaw with bone grafts, nerves and arteries taken from my legs, and a toe from my left foot was amputated to make the jaw hinge; also, a metal plate to keep the new jaw bone in place.


The first operation didn’t work; the bone rejected after months of severe infections and operations to try and find out why the infections kept coming back, which is why then I had to endure a 2nd operation to reconstruct it again. During the second operation a nerve was damaged, paralysing the left side of my face. Another major operation was done to insert new muscle and nerves so that some movement would return. I have a piece of gold in my eyelid to help it close at night.


I was put on lots of different IV antibiotics over a course of many months. Most of these didn’t work and the infection kept returning, then microbiology tried me on a different antibiotic that worked and to this day I’ve had no infections and the new jaw has taken. I was told my condition was life threatening and I could die if it spread to my spine, but I have since had tests done which has proved the disease has gone. Doctors seem to think this is due to the chemo, but again they’re not entirely sure.


Gorham’s went into remission aged 21 years old.


It affected me in so many ways. I missed out on most of my childhood and teenage years because of all the time I had to spend in hospital. This also affected my schooling, my appearance, and general quality of life.


I am currently writing an autobiography that is based around Gorham’s, as I think it would be helpful and interesting for the public, hospitals, health professionals, and for the research into this rare disease. Surviving this disease has made me feel that I’m here for a reason, to help raise as much awareness as I can about this and contribute to the incredibly important research that needs to be done into this.