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Questions for Dr. Kennedy
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Stiff-man Syndrome
Posted by: Richard
Date: May 21, 2002 9:14 PM

As an allergy patient, I was researching EPD (enzyme potentiated desensitation) shots when I came across your web site. As I was reading about EPD, I came across a section on Stiff-man Syndrome. This is a very rare disorder and very little information is available on the disease. I was very excited to see it mentioned as part of the benefits of EPD. I have a very dear friend with this debilitating disease and he has been left with very little hope of fighting for any kind of recovery. The first thing that I did was call several doctors here in Texas who took part in the EPD study for eight years, and also talked with a doctor in Missouri who took part in the EPD study and none of them had ever worked with a patient with Stiff-man Syndrome. Next, I called and spoke directly with Doctor McEwen, who originated EPD, in England and he also had never had any clinical study on a patient with Stiff-man Syndrome. So here I am praying that you have had some experience with EPD and Stiff-man Syndrome. I am wanting information for my dear friend that may give him hope. To just tell him that you said EPD can help with his disease is not enough. I am hoping to be able to give him clinical study information, or maybe get him in contact with someone who has been through EPD for this disease.
I am also interested in names of anyone who reads this who may have this disease who would be willing to share their progression with this disease. Your answers are hope for my friend. Thank you for all you have helped.



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