Nemaline Myopathy Support Group

Introductions

Meet the website creator

My name is David McDougall and I live near Edinburgh, Scotland. I was born in 1964 and diagnosed with NM at age 2. When I began surfing the internet in January 1999, I knew nothing of nemaline myopathy other than my own experiences. My doctors have never been able to tell me much about this rare genetic disorder, as most have never heard of it. I had become increasingly frustrated at not knowing anything about my disability other than how it affects my daily life. I therefore started this website in order to find other people around the world who, like me, have doctors with little knowledge about nemaline. These regularly updated pages have developed into the definitive web site for anyone seeking information about nemaline myopathy(NM). I am delighted to say this website has brought together many people from around the world. I have been contacted by over 900 people with NM, plus many relatives, doctors, scientists and support professionals.

Without the internet almost none of the contacts I have made would know each other existed. and so far have made friends in many other countries; found that research is being done in several laboratories and that one of the top scientists researching NM also comes from Scotland! The website began with a few pages and grew quicker than I expected. Now an email chat groups are well established along with Facebook groups, and several parents have benefited greatly from the knowledge of other parents who have learned the hard way. I have also put children and teenagers in touch. Now they have become Facebook friends. Let us all unite and help each other when the doctors cannot.

I would also like to thank Krystyn Plymell who started the original support network way back in 1990. Her newsletters are available on this website.

Yours sincerely,
David McDougall
October 2014

Dave's Page (Wha's like us?)

  • Age 1
  • Age 2
  • Age 4
  • Age 5 - First school photo
  • Age 7 - (I'm on the right!)
  • Age 8 - on my favourite bike
  • David
  • My Sports Car
  • bootstrap sliderOwned from 1988-97
  • Stag with soft top down
Age 11 Age 22 Age 43 Age 5 - First school photo4 Age 7 - (I'm on the right!)5 Age 8 - on my favourite bike6 David7 My Sports Car8 1977 Stag with soft top up9 Stag with soft top down10
wordpress slideshow by WOWSlider.com v7.8


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 Purchase Ledger for almost 12 years, until redundancy in September 2006. Since that day I have enjoyed getting up after 10am!

Retirement

Having applied for early retirement on ill health grounds, I officially retired on April 1, 2010.

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. I spend quite a bit of time in the summer raising trees from seed. These will go onto generate income for the NM Support Group Fund.

Frustrations

Not being able to do as much as others, especially now that I'm older. Doctors who have not heard about NM.

No GP 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 Prof. Kathryn North (Australia), who sent me a copy of "Nemaline Myopathy - Current Concepts". I have since collected other publications.

Feeling alone with this disorder, I started researching in January 1999 and have made contact with over 700 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 in several countries. The NM community now has several Yahoo chat groups and Facebook pages covering four languages, the Nemaline Myopathy Foundation(USA), and A Foundation Building Strength for NM(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 next 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. NMC11 was in London, and NMF13 was back to Canada.

Yours sincerely, David

Most significant point in life

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

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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