Me and my twin brother were born with a very rare condition called Marfan Syndrome, which has caused us some very unusual situations over the years, mainly for doctors, since I do believe we are the only twins with this condition.

We were told that we would probably not survive the first few years of life, and of course, us being so stubborn, we surpassed that. Then were told that we would not live past 20, because of the serious effects from the Syndrome, and well, needless to say, we are still sticking it out.

(Rod shared with me that he and his twin brother will turn 35 in August!)

Up until a few years ago, our condition became worse and worse, and we were told because of this Syndrome, which there is no known cure or treatment for that we would need immediate heart surgery, or we would die from this condition. So, in November of 2003, we were the first twins to have our aortic roots replaced, with synthetic ones. 

My twin brother was the second, and I was the third person to have this procedure done in Canada. You could imagine the surprise of the surgeon to have twins undergo such a procedure, at the same time. Even though we were given extremely low odds of surviving the surgery, again, we beat the odds, and survived it. We are still currently undergoing complications from the surgery, but we are coping.

Even though we still face many obstacles from this Syndrome, we will continue to fight the battle, just because we can.  Along with these problems from the Syndrome, we are coping with other injuries, and conditions, from normal day-to-day wear and tear, and it is to the point that doctors and specialists won't treat us. My twin brother has been waiting to have a stomach hernia repair for over 3 years.

Normal people can get this procedure done in about 6 weeks, but because of his high risk condition, no surgeon wants to perform the surgery. And, because he is at high risk of having a stroke.  But the hernia won't go away by itself, and is on the verge of bursting.  If anybody reading this knows of a good surgeon please let us know.

We both have worked the same type of jobs in the  auto reconditioning field for over 11 years ... up until our injuries got the better of us.  We are now both on disability pensions.

We always lived with each other, we both drive modified station wagons, well, until recently, when my twin brother's doctor pulled his license because of little mini strokes, that they won't confirm or treat him for.  And, we can't find a neurologist who can diagnose and treat my brother. Again, if you know of such a person, please let me know.

It is a four-hour trip, East and West of us to see specialists, and most of the time, our trips are wasted trips because of misdiagnosis of problems.

It is quite hard for me to drive all the time to get to these appointments. I have kept a journal of a lot of these situations, and when reading them again, one just has to laugh. If any publisher is interested in writing such a book, or a biography, or a movie about twins and their hardships, look me up, I've got a lot of good tales to tell.

It will make you shake your head, and question the medical system.

When you smile at the world, the world smiles back at you ... well in our case... most of the time.

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UPDATE 7-22-06