Thursday, November 27, 2008


I am one of the lucky people who knows what's wrong with me.

I found out about 14 years ago that I have Stickler Syndrome, a connective tissue disorder that can affect the joints, eyes, ears, heart, and face, basically anything that contains connective tissue. It's a genetic malfunction in the tissue that connects the bones, ears, and eyes. It's a common condition. The problem is, it often goes undiagnosed or misdiagnosed.

Initially, I thought I might have Marfan Syndrome, which is considerably worse in that it's often fatal. However, after visiting a geneticist at the Children's Hospital of Eastern Ontario (CHEO) and having some tests completed, he decided I most probably had Stickler.

Stickler has affected my life in very real ways, from everyday life, dealing with the mental and emotional aspects, to such decisions as whether or not to have children. This site has been developed to give a personal view into the life of someone who has suffered with Stickler for her entire life, to help others understand what Stickler is and what it means for those affected, and also to give a venue for others with actual connective tissue disorders to teach and learn from one another.