In my telling of the unreal trying to get help scene I have ignored the physical problems and some of the advice I have gotten over the years.
All my doctors have told me that working was actually the reason I am still able to even move. I try to keep active, anyway as much I dare. Yard work, housework, et cetera. My stamina is probably about a fifth of what it was just six years ago. My hearing is very bad now. My eyes are bad and I can bet some part of my body will be aching when I get up in the morning.
I have a niece and nephew with Hunter's and want to see them get a little more physically active. But that might not be possible for them.
The pains in my shoulder are sharp shooting pains, in my hips they are a dull constant pain. I have never believed in prescription drugs and find that Aleve helps. In my trips to the pediatric hospital in Iowa City I see the kids with bad cases and I thank God I was not that way. I pray for the families and wish them the best of luck and hopefully they can get some help from somewhere. They have a new treatment which would help me by slowing the process but it is not affordable.
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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