My Story
Born: August 12th, 1964
Edinburgh, Scotland

Health/abilities:
I had a biopsy at age 2 1/2. This is when nemaline myopathy was diagnosed. (No history of NM in the family.) Second biopsy at 16 which showed no major deterioration above what was expected. Although never as strong as other children, I managed most things. I was never really aware of being disabled, as I was not really treated any different. By the age of 12, I was not able to walk as far. I attended a school for disabled kids from then where I made friends with several boys who had muscular dystrophy(MD). Seeing similarities in my own condition. I was worried that I was going to end up the same way. Eventually I was told by Professor Alan Emery that I didn't have MD. This was a big load of my mind. I can only walk 40-50 metres nowadays. I use a wheelchair when out shopping etc., Chest infections have always been my problem. Every year since I can remember. I had bronchial pneumonia when I was 7. And lucky to survive it apparently!
Milestones:
Learned to walk at 14 months. Attended regular school aged 5-12. Ride a bicycle at 6. Moved to high school for disabled children at age 12. I joined the (disabled) Scouts and went on several camping trips. The best camp being two weeks in Norway. Left school at 17 and found a job with the Medical Research Council in Edinburgh, at the hospital where I was born! Passed driving test at first attempt, although only for an automatic car.
Employment:
I started work for the MRC in the electronics workshop. Building circuit boards and other items for prototype computers being designed for the medical research market. As this work ended, I moved on to using PC's and the early days of the Internet. I began creating drawings and graphics for scientific papers and seminar posters. Eventually the Pattern Recognition dept. closed altogether. A job came up immediately in the admin section, so I applied. I was doing the accounts for almost 12 years, until redundancy in September 2006.
Hobbies:
Classic cars, music, home computing, pond keeping, light gardening, researching info on nemaline myopathy and contacting/helping people affected by it, whether personal or professional.
Frustrations:
Not being able to do as much as others, especially now that I'm older. Doctors who have not heard about NM.

No doctor has ever been able to give me much information about NM. They just say it is very rare. In 1999 I started surfing the internet for information. And found Assoc. Dr. Kathryn North (Australia), who sent me a copy of "Nemaline Myopathy - Current Concepts". I have since collected other publications. Passing my doctor copies of notes I have, it became apparent that I know more about NM than he does!! Feeling alone with this disorder, I started researching in January 1999 and have made contact with over 450 people with or related to someone with NM. I am always delighted to find others to talk to, and know that there is even research being done.
The NM community now has 4 egroups running, and the NM Foundation in USA. In 2004 myself and a few friends in Toronto organised the first NM Convention(NMC04) where leading scientists from Finland and Australia gave talks on their genetic research. NMC07 also proved to be a great success with people coming to Scotland from 14 countries! Our latest convention was the biggest one yet. New York hosted NMC09 where 140 people met up to share stories and experiences. Many had also attended the previous meetings too.

Yours sincerely, David

Most significant point in life.
1986

Watching television via the mirror in an
Iron Lung (Originally used for polio victims)

I was feeling quite lethargic in the spring/summer of 1986. It seemed more tiring climbing the stairs to the bathroom than normal. This went on for two or three months. Eventually, I went into hospital because I was having trouble getting a good nights sleep. After three days of various test for asthma etc., the doctors gave me a single side-room for peace and quiet. During the afternoon I was sitting up reading a magazine, when suddenly I could not breath. (My mother ran out the room screaming for doctors.) That day, 7 days before my 22 birthday I had a cardiac arrest. This was caused by a blood clot in my right lung. Lucky for me the doctors were doing their rounds in the next room. I was out cold for a week on ventilation and drips etc. I got the fright of my life when I came round. On my birthday the doctor told me preparations were being made to fly me by air-ambulance to the Royal Brompton Hospital, London, where I spent about 10 days in an "Iron Lung". At least I got to see a bit of London during my 3 week stay, a free bed and 3 meals a day. I only see a respiratory consultant annually now.

David

My Sports Car

My second car is a white1973 Triumph Stag. I bought this one in 1997. Only ever driven on dry summer days, they turn heads with their beautiful body lines and burbling exhaust note. These cars have a silky smooth 3 litre V8 engine. The roof is removable and a soft-top is stored behind the rear seats.
I am also a member of the Disabled Drivers Association.