American Porphyria Foundation Begins Support Groups Around the United States

American Porphyria Foundation held it's first Support Group Leader's Conference recently in Houston. Attendees included Desiree Lyon-Howe, Executive Director, 15 porphyria patients, Dr. Claus Pierach and Ovation Pharmaceuticals Representatives.

(PRWEB) May 14 2004--Recently, the American Porphyria Foundation held it's first Support Group Leaders Conference in Houston, Texas. Desiree Lyon-Howe, Executive Director and founder of the foundation, brought together porphyria patients from around the country, representatives from Ovation Pharmaceuticals Company and one of the world's most renown experts on this rare disease, Dr. Claus Pierach.

The focus of their meeting was to combine patients in the effort of the APF to spread educational information into the general population on porphyria.

Awareness of porphyria increased after the release of the movie, Mad King George, which portrayed the fierce battle King George III had with the disease during the Revolutionary War. In fact, many historians believe his illness had much to do with his lack of attention toward the Patriots in America and the ultimate loss of the colonies.

Since the disease is rare and exhibits so many symptoms it is called "the little imitator," misdiagnosis is prevalent and people go for years without a diagnosis. Some even die or are placed in mental institutions by mistake because the disease is so difficult to diagnose. The pain of porphyria is said to be one of the most painful experiences known to mankind, but many patients are left in horrendous pain because they are left undiagnosed.

For more information on porphyria please visit the American Porphyria Foundation at

http://www.porphyriafoundation.com/