It has been a couple of years since I last posted but I wanted to share some quick updates on my disease in the hopes that I might be able to help someone else that is struggling with it. Unfortunately my symptoms have gotten much, much worse and in February 2011 I had a hypertensive crisis and went into kidney failure. I am now dialysis dependent and am hoping to have a kidney transplant in the future. I have lost the vision in my left eye, my hair is falling out. This disease continues to disfigure me and attack my connective tissue all over my body. I am in pain every day. Life is so hard some days, I feel like no one understands what I am going through.
I have exhausted all of my medical options in Canada and will be travelling to the Mayo Clinic in Rochester in a short time. I will be sure to come back and share my experiences.
In the meantime, if by any chance there is someone else out there that also has Grzybowski Syndrome, please please contact me. Maybe we can help each other.
Take care everyone,