A letter to Dr. Ramon Brugada from Mr. Nelson, December 2002
Grateful to be here Dr. Brugada, Firstly, I would like to deeply thank you and your brothers for the research and progress you have made into understanding and finding treatment for this syndrome as well as this forum for staying informed of future developments. I was diagnosed with and treated for Brugada Syndrome two months ago after suffering an entirely unexpected attack and am now the recipient of a defibrillator implant. I am 48, male, of Anglo-Nordic background, have no family history of unusual cardiac issues and the only pre-indicators might have been a very minor arrhythmia first detected when I was around 20 and occasional faintness (usually resolved by laying down or getting some fresh air). I was incredibly fortunate when it hit me as I had just pulled over from driving and my wife was with me at the time. I was mentally passed out for about 5 minutes with my heart apparently non-functioning for about 20 seconds. When I came to, I could scarcely believe what my wife described that my body had just gone through. She thought I was dead until my body started up again and went into full body spasms. I remember nothing of this. Emergency mobile medical service was contacted and took me to Overlake Hospital in Bellevue Washington where after ruling out all the usual heart, seizure and flu causes it was determined by the cardiologist on call, Dr. Joseph Doucette, that I just might have this very rare condition called Brugada Syndrome. This was pretty amazing as this hospital is one of the finest in the Greater Seattle area for treating cardiac issues, yet no one else in the ER or CCU had ever heard of it. After more questions and more tests it was determined that this was the apparent cause and a few days later I had a defibrillator implanted in my chest by his clinic partner, Dr. J Alan Heywood and sent home to recoup. I was reading about the recent symposium devoted to sharing information and research at http://www.simposio-brugada.com.ar/ing_home.shtml. I congratulate and thank those who are pushing for an affordable, safe treatment. This is, as you know, an extreme body betrayal that you just don't see coming and are helpless to respond to when it strikes. I was very lucky to first of all have revived and then been so close to adequate, educated treatment facilities. The bill for me was about $115,000 (mostly the defibrillator, a Medtronic Marquis) so I'm extremely empathetic for people without the means or technical resources to have an implant as a safety net. I'm not typically the activist personality type, but I'm going to do what I can to get the word out of this condition so that others at possible risk might get some testing done before it's too late. If you ever need to provide more evidence to possible research
supporters who think that they and theirs are genetically or racially insulated
from sudden death, I'm available to dispel that notion.
I'm deeply indebted. Without you and your brothers
fortitude and perseverance, I would be living one minute at a time.
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