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.

Sunday, July 8, 2007

In the summer of the year 2000 was when things began to happen. I began to tire very easily and started missing some work. I had rarely had to go to a doctor but this time was different. I had had two linguinal hernias repaired years before but like I say this felt different and I knew I was going to need help. The whole 2 year process started with me going to a small clinic in a shopping mall. I was seen by a gal who when hearing what I had recommended that I see a specialist.
I honestly think someone was looking out for me because the specialist I went to was the best thing that could have happened to me. He was a Rheumatoid Arthritis doctor who even knew what Hunter's Syndrome was. I have to admit that I had not met a doctor except at the University Of Iowa clinics who even knew what Hunter's was. He was intelligent, caring and understood what was happening to me.
One thing that was the shocker was when he asked what I did for a living and I answered "construction." He replied,"You are done." He gave me a prescription for Vocational Rehablitation and I contacted them. I went to the office and they set me up for a week long study to see what I could do. I tried various duties and my eyesight, hearing and lack of communicative skills always stood out. At the end of the week they had a conference with the office worker stating they did not think I was capable of holding any kind of job. They were very nice people who truly wanted to help me. But with their evaluation the nightmare would begin.

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