Welcome to Screwed On Tight!
Have Chiari Malformation of the Brain? Think you have Chiari? Or do you just want to learn more? Which ever the case, you've come to the right site. Hi! My name is Mace', though; most spell it Macie or Macy; either is cool too. I'm 16 years young and currently living with Chiari, E.D.S, P.O.T.S, and G.E.R.D. There are many families around the world who are struggling with Chiari and feel like they're misunderstood, walking in circles, or just flat out alone.I'm here to try and make it a little easier to live with. Here on Screwed On Tight, no one goes unnoticed. Just diagnosed? Welcome to the Chiarian family! Don't know if you have Chiari? Check out the symtoms list! There will be links to other wonderful websites and hospital recommendations. PLEASE do not hesitate to ask questions or share your story. I love interacting with everyone. Also!, stop by our 'Guest Book' and let us know that you visited! Stay tuned and return for new updates!! (Charity coming soon!)
A Song From One Chiarian to Another: http://www.youtube.com/watch?v=_Gcrx2Ab0FM
A Song From Chiarians to Chiari: http://www.youtube.com/watch?v=r_8ydghbGSg
How Screwed On Tight got it's name:
* When I had my fusion sugery, the neuro surgeon litterally screwed my skull to C1, C2, C3 (my spine).
* The Chiarian family is a unique group of individuals. We stand hand-in-hand with a tight grip and together, as we support eachother; we can accomplish anything.
Our motos are:
* Live in the moment. Don't take crap from anyone. Stand up for what you believe in and regret nothing.
* Chiarians stick together. There are more Chiarians in this world than you think. If you think you are alone, share your story, get the word out. People WILL join you, support you, and stick with you.
* Make light out of the darkest things. Always look for the positive during the negative times. You can AlWAYS find something.
* Losing is NOT an option.
Chiari Malformation is not noticed enough
We need to start spreading awareness-TODAY!!
Sunday, September 22nd, 2012; a Chiari Malformation Walk will be held in Bernegat, New Jersey. I am a registered walker and chairity reciever. Conquer Chiari: Walk Across America is an amazing cause. I have been fighting Chiari for my whole life and it...