How Zipperheads for Chiari is..

I am not a company or doctor, I am a support group to help people with Chiari or affected by Chiari. My name is Heather and I have Chiari. I had my surgery in August 2009 and still suffer from the side effects of this disease.

I realized after my surgery that I felt alone. I was depressed and confused. I was very lucky with my doctors but felt like I was lost and I needed to be lifted up. I didn’t want to here I would be better “NOW”, but I did want to here, “I understand and I survived”.  Everywhere I looked there was so much negativity.  I figured if this is bad for me and my, pain how many others are out there that need and want positive support?  Who else feels this way? So I started working harder on my Facebook page called “Zipperheads for Chiari”.  As of today we have over 900 people and I am happy to say we are a positive and loving support group.  We embrace all companies and foundations that are here too spread awareness, support and education.  Chiari is a symptomatic disease, not all my symptoms or experiences may be the same as you or someone you know. What is the same is that Chiari has affected our life one way or the other.

Many family and friends are affected by Chiari without the support or understanding of what a Chiarian goes through.  As a Chiarian I want to create a place where we all can support and learn together.

Chiari does not just happen to the person it happens to the community.

During the time I have spent on Zipperheads I have learned a great deal about the children that live and suffer from Chiari. This has broken my heart. We have children to young to talk or identify the symptoms and are push out of Neurosurgeons offices. They do not given the correct surgery and correct help. These are our babies, the hope and dreams of our future. They need to be heard. We need to be there voices and the support for the family and parents that have to deiced on what will be right for their child. They need us, with love and Support.

Mission: To support Chiarians, family and friends. We want to help all with educate, love, support, understand and lead them to the road of a positive life and LOVE, LOVE all of you.