4/11/96

I found access to your site through the help of the editor of the genetic weekly. I am just beginning to use your site to search for specific information, especially research and live clinical trials worldwide, regarding Hunter Syndrome or mucopolysaccharidosis lacking the enzyme iduronate 2 sulfatase. A friend of mine has a 3 year old son that has just been diagnosed with Hunters syndrome severe. To date his symptoms are mild with hearing loss, limited speech, enlarged liver, clawed hands, and upper respiratory noise. I would like any information about outcomes of clinical trials and the ability to participate in upcoming experiments. I would like to know who is really on the ball conducting research in this area. I understand the treatment at this time is supportive only, but the genetic and enzyme replacement therapies are moving so rapidly there is hope. I have 15 years experience in the medical field. All the help you can give would be greatly appreciated!

Brenda

Apparent patient location: Europe