Michael

Hello my name is Michael. It took a long time for me to reach out. I have diffuse scleroderma yes I am one of the few males that have this disease. I spent 23 years being a Printing Press operator feeling like the world was in my grasp. Working 12 hours a day going fishing and hiking with my family was standard on the weekends. But it all came to a stop with SCL. Thank god my children are grown. One is in the Navy and One lives on her own. It took a long time for the doctors to find out what was wrong with me because I am a male. I went to John Hopkins The University of Georgetown and talked to Virginia Steen, one of the best in the country. It doesn"t seem like anyone wants to change their opinion about treatment or guide us to other countries that don't have the FDA guidelines.

My wife cannot adjust to my determination to look for an alternative medication or some kind of relief from the discomfort. Don't get me wrong - we have to band together as individuals to form a group to let the world know about this disease like everybody knows about MS, Cancer, Parkinsons! Are we all frustrated when we say to people we have Scleroderma people say HA What is that?

All I want is some good solid feedback as a start Maybe we can start something and maybe not. But I will be at the SF conference in June (2001) to start the ball. Please contact me if you want to ruffle some feathers. There is strength in small numbers.

Or we could just talk to show our frustrations to let it out between us.

Michael - ozzman215@aol.com