- Posted March 2, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Living with Stiff Skin syndrome
My son Derek has a rare condition called Stiff Skin Syndrome. He is the only Canadian that we are aware of with this condition and there have been 40 people worldwide diagnosed. He was diagnosed quite young however no one knew at the time how the Stiff Skin Syndrome would affect him. Not much is known about the condition or its prognosis. Basically as Derek grows, his skin won't grow with him and continually tightens up around him. Derek just turned 18 last month. This makes doing anything painful and difficult. Mobility is an issue as his joints are very tight and his bones have bowed as they are not able to grow. He tires out very fast. His one shoulder has already stopped moving. His speech is getting more difficult to understand.