Why is awareness important?
Two and a bit years ago I hadn't even googled my condition, it was when, after a TV show invited me, that an AMC mom contacted me and asked if she could visit me to learn a bit more about Arthrogryposis because she had never met an adult with the condition. It was when it all started for me, she told me about all the support groups that existed and everything, the internet was here to allow us to get in contact with all the AMCers around the world so I decided to start blogging as a way of raising awareness.
To many people awareness raising might not seem as important, but let me tell you it is! Not just because is nice to see that people cares, but it actually makes a difference, it lets families get in touch with each other, it shows new families with an AMCer that there is hope for their child, with a condition as rare as AMC, the more people knows about it the more families find comfort and information about something that truly affects their lives.
Take me for example, I never thought of the future, I actually didn't even use to think about AMC at all, it was when someone asked what was wrong that I thought " Oh yeah, I have a disability" but it was about it, I lived a normal life with a surgery every now and then and a lot of Physio in the middle but it wasn't until after being in contact with other AMCers that I learned many more things about it and how I had to prepare my body for the future years. I never thought of myself as a disabled person (I still don't) but I'm now aware that I have to do some things differently in order to have a better long quality live. And this is how a bit more information has worked for me, imagine how new parent that is told that their child will never be able to walk or be independent will feel with some information that proves all of this wrong!
So please please please wear blue this 30th of June and use the social media to spread the word, Arthrogryposis Multiplex Congenita Awareness day is there to give hope, information and a family to people around the world that are fighting the same battle, the more people knows about it the more families will connect and find hope...