Thursday, September 13, 2012

And THIS is why it's important to spread awareness

I have a Google Alert set up to receive emails any time Apert syndrome is mentioned in the news or on the internet. It's exciting to see all the articles across the United States about families who are doing their part to raise awareness about their child's condition and the organizations like CCA that help them.

However sometimes I get an alert that links to message boards where people are asking questions about Apert syndrome - whether it be for a school project or some other reason.

A while back, I clicked on one of those alerts and it brought me to a message board where people were discussing various medical conditions. The banter back and forth seemed to be among educated individuals so when I read this particular mention of Apert syndrome I was floored.

"Can my child get Apert syndrome by touching another person affected with it?"


Nobody had responded to the question yet, but my fingers began typing at warp speed to set the record straight. What I wanted to say and what I ended up saying are two completely different things. Rather than bash this person for their ignorance, I decided to use it as an opportunity to educate them about Apert syndrome - what it was and what it most certainly was NOT (ie. a communicable disease you can spread by TOUCH).

I encouraged them to respond to me via email if they had any further questions. Needless to say I never heard from them.

When you have a facial difference - or any physical difference for that matter - it is not uncommon for people to stare. To be curious. To wonder. But it never occurred to me that people might think that Apert syndrome was something one could "get" through casual contact. It truly opened my eyes to just how important it is for us to spread awareness and advocate for our loved ones affected by facial differences.

So during this month of awareness - I hope that each of you will do your part to educate others. Host a picnic. Hang a poster. Talk to your child's school. Or even just start a conversation with the people who linger in their looking at the park or grocery store.

Let's get the word out there and set the record straight. These individuals deserve social acceptance and to know that "Beyond the Face is a Heart".

To read how I am doing my part - visit my personal blog 
and read my awareness post: What It's Like

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