When I was a young boy I noticed some bumps on my back in the shoulder area. There was no pain associated with them, they were just there. I told my mom and she took me to the small town clinic. The doctor there had never seen anything like this and recommended a trip to the city to see a dermatologist. My parents took me there and the dermatologist cut some of them off to analyze.
As far as I know he could not figure it out either and he suggested the Mayo Clinic. How my parents could afford this is beyond my explanation but seeing how it was in the late sixties, early seventies maybe it was not as hard to get help then. (Because I sure get none now.)
At the Mayo Clinic there were countless doctors and tests. It seemed like to me they took hundreds of blood samples. Actually it was probably few but as young as I was it seemed they were taking blood every hour. Finally we got to go home and that was it. They figured out what I had and I would not know until my early twenties.
Life with Hunter's Syndrome
I am going to try and describe what the genetic problem does to a person. Hopefully, I will help someone in advising how to deal with the physical aspects......also some of the emotional and economic things that will affect anyone that has to get help. These physical problems definitely will change and alter your lifestyle. I am not going to get technical because with all the technical input from all the doctors I have seen never meant anything to me.(I know they are trying to help but I need layman's terms.) All I knew is I was way too young to be feeling this way.
Hunter's Syndrome is a rare disease in which some enzymes are missing. While most people's joints heal the basic ingredient to heal is missing. In other words you age much faster than a normal person. It has affected my hearing, eyesight and many other parts of the body. Actually I am lucky too have a such a mild case as I am now 46 years old.
The story starts at the bottom post and works its way up.