I Have Marfan Syndrome

My mother left a comment in my Blog Re-Post about the Losartan Trials (Losartan vs Atenolol Trials).  After talking with my wife about it and the Re-Post, along with my introduction, I felt that I needed to write this.

Although we have decided that we would never enter Samantha or Olivia in a drug trial, both my wife and I would like to thank those parents who do.

My mother does not believe in animal testing, nor in human testing.  And, though I completely understand her view on that, I have to say that I don't understand how it would be possible to make any type of scientific advancement.  There is the arguement that testing can be done in the lab, but there are so many unkown variables going on in the human body that just cannot be replicated in the lab.

Parents are submitting their children as guinea pigs, but using that terminology is by no means lessening the agony the parents must go through to make the decision to place their children into a drug trial such as this one.  However, without parents who do place their children in these trials, we cannot learn potentially valuable information.

It was easy for us to make the decision that we made, because of how Marfan has affected my family.  It has affected our aorta in a way that we can see it coming, and generally when we're in our mid 20's... and we're kind of tall.  But there are some with Marfan who are affected in more severe ways.

So, again, my wife and I thank the families who are invovled in the Losartan vs Atenolol Trials, and we hope for the best.

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Comments (2)

• m-d-Y H:i:s | | Dan Sfera  - Tough subject

  This topic is a tough one, and not black or white in clarity. I truly believe more information needs to be provided by industry professionals within clinical trials to erase the stigma of drug studies. How did you go about gathering the information needed re clinical trials to make a decision?
  Best regards and Good Luck!

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• m-d-Y H:i:s | Cam

  As much as I want to call your mother's viewpoint downright stupid, I'm going to go with "grossly misunderstood." You are correct in saying that without human testing of drugs and procedures, we would be centuries behind in medical advancement. Yes, forced medical testing on humans is despicable; but virtually all human testing is completely voluntary today, and medical regulations require that all expected risks and benefits be spelled out in detail to all participants. In the case of the Losartan trial, we have the luxury that this drug has been used for years by thousands of patients with little side effects. And, as a side note, your mother's comment mentions that the Marfan affects the entire body, not just the heart, and mentions that looking at the whole body is a better way of going about it. In fact, the affects of Losartan (at least in the early mice trials) are on the whole body- strengthening connective tissue throughout. A side study is being done to monitor Los...

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