Monday, October 28, 2013

Human Guinea Pigs OR Helpful Pioneers?

I never have liked the term "guinea pig" when referring to human beings. To make matters worse, it is usually used in a negative way and has a negative connotation. Whether we like the term or not, the term "guinea pig" simply means "somebody or something experimented on: somebody or something used as the subject of an experiment, test, or trial" according to the Bing dictionary. It really doesn't have to be considered something negative; however, I would like to recommend that instead of using the term "guinea pig" instead we use the term "helpful pioneers"!

Pioneers paved the way for others to live a better life. They endured hardships to prevent future generations from having to do likewise. Pioneers were brave and faced uncertain futures. Don't you think that is a more fitting description of the good-hearted souls who take part in clinical studies to progress our current knowledge of whatever subject is being studied?

Today I'd like to discuss how our children and/or teens and/or adults born with congenital heart defects can become helpful pioneers and help the medical profession learn more about what it means to have a congenital heart defect. Since so many babies and children died before reaching the teenage years (much less adulthood!) there is little normative data on individuals growing up with congenital heart defects. 

I found a terrific site that lists the different research projects that are going on by state (for those of you readers who live in the United States)! Here is the link: Clinical Trials Involving Congenital Heart Defects

We have an aging congenital heart defect population. In order for current and future generations to know what to anticipate, we must have research conducted to determine what is "normal" and what the range of "normal" might be. Gaining this knowledge is one way we can better prepare for the future and try to prevent the anxiety that accompanies not knowing what we are facing. It is not knowing and wondering if what is happening to your child is commonly happening to other children that makes parents so anxious. The same is true once our children grow up and start experiencing certain symptoms. Knowing that others with their same diagnosis commonly share their experiences makes people feel less alone and afraid. Learning what to do when certain symptoms appear, empowers our CHD survivors to be better advocates for themselves and helps them make better choices for optimal care. 

If you don't see a clinical trial you would like to participate in, why not share the information with others you know who could be helpful pioneers?

Please visit Baby Hearts Press at for resources for the congenital heart defect community.


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Anna Jaworski said...

I do indeed use Twitter! You can even use the Twitter widget on the side of my column. :-) I'm so glad you're enjoying my blog.