March 24, 2013

Online Medical Research: A Blessing And A Curse

With so much medical and genetic information accessible online, many parents regularly turn to the internet to research everything regarding their children's health. If you're the parent of a child with special needs or specific medical issues, it's crucial to understand as much as possible about current challenges, potential problems and helpful therapies.  

This knowledge is both a blessing and a curse.

Our daughter has a chromosomal deletion. This means she is missing several genes, each with a specific function(s). This damaged DNA makes her susceptible to certain diseases as a result. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases.

We have a comprehensive list of which of our daughter's genes are affected and, after delving into the online world of genetic gene cards, we know which diseases may loom.

I don't have to tell you how insanely frightening this is. It's like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, and you're powerless to do anything to stop it.

There's nothing you can do, but being armed with information and a more solid understanding of your child's diagnosis or prognosis is essential in terms of being able to ask the right questions. 

I can say from experience that many doctors do not appreciate Dr. Google. In fact, they are often quick to dismiss anything "found" on the internet. I get it. I'm not a doctor. That said, my daughter's doctors do not have the same vested interest in my child. They look after hundreds of children. They can't be expected to be aware of every current development or discovery; especially today, as new medical and genetic research is cropping up at a furious rate.

So parents, like me, continue to read medical abstracts, dictionary in hand, uncovering as much information as possible.

I hate reading about what might happen to my little girl. But how can I not? My job is to look after her and protect her in any way I can.

And for those who shake their heads and say, "You can't trust what you read on the internet!"...

....I'm not an idiot.

I understand that every piece of data should be scrutinized and cross referenced and not accepted as fact until confirmed by a doctor. So please don't pat me on the head and tell me in a condescending tone that you know best. You don't. You are not her parent. I am.

And so I will continue to read and research and ask questions. I will ask YOU questions. I will listen to you and respect your opinion. If our opinions should differ and my instinct indicates that what you are prescribing could put my girl at risk, I will seek another opinion.

This is the age we live in. The layman is no longer content to accept the doctor's diagnosis as the final word.

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