I had never even heard of PKU when my daughter was diagnosed. I'm pretty sure that most parents of PKUers would say the same. It's just so crazy to think that most people are uneducated on the condition, but that so many people are carriers and don't even know it. What is really crazy though is that certain states are unaware of the fact that it is healthier and beneficial to people with PKU to stay on the diet FOR LIFE! I was looking up different state policies and WAY too many states only require formula to be covered until a child turns 18, 21 or there was one that stops at 6! THAT IS INSANE! One mom that I spoke to recently told me that in her state they are not covering her babies formula "because lots of babies need a special formula..." uhhh... so not the same thing. Yes some babies might need say a soy formula or something else THAT YOU CAN GET IN A GROCERY STORE, and that DOESN'T COST $400+ A MONTH! Sorry for all the caps but come on...
So I am writing this post out of frustration and to say that it is up to all of us who have been affected by PKU in some way to bring awareness to the condition. We need to write to our governments, share our stories and educate others. May (PKU awareness month) might have come and gone, but that doesn't mean that we should stop spreading the word.
You can find a PKU awareness t-shit at the link below. If wearing a t-shirt like this just is not for you, you can....
Make you own t-shirt
Put a sticker on your car (really they do raise awareness, I used to play a car game where I would google any awareness sticker I saw on roadtrips).
Write to your state or provincial government.
Share your story with local news, or on a blog, or just on your Facebook.
Hold a fundraiser in your community for one of the many good causes in the PKU community (e-mail me if you can't think of one!)
Share this blog or other PKU blogs and website with friends.
http://teespring.com/PKUchoice#pid=162&cid=1028
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