COULD NO LONGER WORK:
As 2001 progressed, I began to realize that my symptoms were still degenerating. Along with the symptoms
I mentioned earlier, I noticed that my mouth would bleed on a daily basis and my headaches were pretty much daily.
It was around mid-summer that I really started to consider filing for disability. For years, friends and colleagues had
told me I should file for disability, but my pride would always dismiss the idea. My whole life I have dealt with problems
and relied on my inner strength and positive attitude to get me through. To come to the point of actually considering the
idea was extrememly hard.
September 19, 2001 was my last day of work. I began the process of filing for disability.
I also began in earnest to learn as much about Marfans as I could. Considering that both my cardiologists and primary doctors
had no other Marfans patients, I knew I had a lot to find out. (thank God for the Marfan Foundation).
I was amazed
how little the medical community in general knew about Marfans. I was also amazed at how few Marfan specialists there were
in the Boston area. Boston is considered to be one of the meccas of medicine in the United States. Granted Marfans is not
the hottest topic on the medical block, nor does it carry the numbers that other diseases or conditions carry, but it is clearly
one of the most mis-diagnosed and mis-understood. There are said to be about 250,000 people in the U.S. that have Marfans.
It gives me chills to think how many people have it and don't know they have it. In my case, I was lucky to have the aortic
surgery in 1990 that saved my life. Granted the quality of my life has decreased since 1990, the meer fact that I didn't die
on the floor of a Montreal restaurant and have lived 26 years since then, I am thankful. The frustrating part for me
and others who suffer with Marfans many complexities, is the cumulative affect of its symptoms on our quality of life and
the general misconceptions of the medical community in its treatment. The heart being the major focus of study is crucial,
but it is not the end all - be all of Marfans research.