Living With Marfans


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 and my fatigue was getting worse.

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.  I had worked very hard on the career I had established and I was so close to the goal I had set in my early 20's.

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. 

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 30 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.