One thing I did get to do which I really liked was take some writing courses through the local college online. It was fun and I learned from others in the "class." The teacher was great and the atmosphere was so different from the construction scene. I miss my work but not the motels and politics.
It seems to me that all the people I have come to meet with Hunter's Syndrome.....each case is a little different. Probably there are so many different strains of the disease they will never all be categorized.
I know in our family the people that have it are quiet, shy and generally pretty calm people. It has taken me 40 years to kind of lose my awkwardness towards those I do not know. Which is another reason I love the computer. This really has opened up my life, with the inability to hear well, it is kind of a dream come true. I can meet others and show my true feelings without being called something by someone who does not have a clue what you are going through. I don't expect people to know how I feel but then again a little respect would be nice.....I recently joined an MPS and Hunter's forum so I know I am not alone with this.
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.
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