We are a group of people who battle daily in pain. We have a disease called Arnold Chiari Malformation, Our brain is pushing out the bottoms of our skulls. It goes undiagnosed for many years. There is no cure. We can have a brain decompression surgery to slow the progression of this disease. There are a handful of Dr's that know about this disease. many affects your ENTIRE body.It affects children and adults.
We have so many do nots in our lives anymore. We basically have to sit on our couch and do nothing. Most of us can not work and have to fight tooth and to get SSI/SSD. This disease can and does kill people everyday.
We are wanting to go on a cruise,between our Dr's appts,everyday living with this disease, hardly ever get a chance to take time to enjoy something special WE ARE CHIARI SISTERS bound together,through thick and thin , healthy or sick. Our bond is so special.We help eachother through thick and thin as the good times the rough times,that a non chiarian could ever understand. Our tears are real.Our pain is very real! We thought this would be the best place to share our stories, our struggles and triamuphs!! A wonderful place to spread more awareness, a place where we can meet eachother, a place to relax, and get away from our everydays lives of Dr's appoitments, the poking and prodding. I never wish this on anyone. We are also putting in our own money to help with the cost. Can you please help us make our dreams come true. Because honestly this might be the only chance to be able to enjoy ourselves.