I’m 18 years old, born and currently living in New Zealand. I am presently studying NCEA Level 3 Economics, English, Statistics, Information.Technology and Information Science at college, and hope to study Economics and Information Science next year at university.I was diagnosed with Gorham’s disease in 2006 shortly after my father noticed that I was holding my neck slightly over to one side all the time, and me mentioning that I would occasionally get electric-like jolts down my neck which at the time was blamed on the copious amount of video games I play. I would also get an incredibly stiff and sore neck when standing on my feet for prolonged periods of time which got so bad when I did my part-time work at a local supermarket that I had to take painkillers during my breaks. This led me to get an appointment to see a doctor. Upon having a GP appointment and a couple of X-rays it quickly became obvious that something more sinister was afoot – for some reason parts of bones on the back of my neck (the Spinus Processes) were missing.

After several more X-rays, a bone-density survey, a CT scan and an MRI, it soon came to surface that I may in fact have this really rare and pretty much unheard of condition called “Gorham’s disease”. This was rather worrying, at first, since a definite “cure” or taking “magic pill” to make it go away does not exist.

Whilst I was in hospital I felt rather uneasy, as I am not the most vocal person in the world, and here I was, thrust into the spotlight, under the most unpleasant of circumstances.

It was eventually decided that I would be put on a course of Radiation Therapy, which was rather nasty to say the least, and mind-boggling and nauseating to say the most. After this Radiation Therapy I was then put on a course of pamidronate, which was recommended because of its recent success with another similar case.

During the time all this was going on I had to wear a neck brace in order to prevent any further damage to my neck, which I did not like at all, as it made me stick out like a sore thumb, and often had people asking me about it, at which I would have to stop and explain everything to them. However, even though I was at college (high school) no one was nasty to me, most people were merely curious.

Ever since having both the radiation therapy and pamidronate, my condition looks stable, and luckily it was caught early enough to prevent any worse damage. I have been lucky in this respect and in the fact that this disease has not prevented me from doing any of the things I enjoy, as I am definitely not the type of person who would go bungee jumping or white-water rafting

Most likely due to the pamidronate treatments, we have recently discovered that there is in fact some re-formation of bone in the affected areas, which is an incredibly positive outcome.

I would like to thank my doctors and all the people who’ve helped with the research so far, including my father, who has pushed for information right from the start, as without them, I would be in quite a bad state.