Sharing Successes & Struggles

(April 14, 2001) - On April 7, Houston, Texas played host to a FIRST-sponsored regional conference. The pleasant spring weather brought 68 people together to share their successes and struggles with ichthyosis and to acquire additional information about their disease and the resources available to them.

FIRST knows how important personal contact can be for individuals and families affected by this family of rare diseases and is committed to providing opportunities whenever possible. Dr. Moise Levy, chief of pediatric dermatology at Texas Children’s Hospital and professor of dermatology and pediatrics at Baylor College of Medicine, spoke to the group, describing the similarities and differences in the various types of ichthyosis. Additionally, Dr. Levy discussed break throughs in genetics, current and potential research studies, and resources available to individuals affected by ichthyosis, including molecular diagnosis and appropriate treatments. Dr. Levy and his associate, Dr. Denise Metarie made themselves available for questions from the audience and individuals.

Conference participants were offered a unique opportunity when Riley, a 6 year old Jack Russell Terrier diagnosed with lamellar ichthyosis arrived. He was accompanied by Ms. Kendra Tucker, a veterinary assistant at the Comparative Dermatology Lab of Texas A&M’s College of Veterinary Medicine. Ms. Tucker showed a video detailing the research currently being conducted by Dr. Robert Dunstan, Riley’s owner. Dr. Dunstan’s efforts to locate the transglutaminase1 enzyme in Riley drew an interesting parallel to the successful research completed in people with lamellar ichthyosis. The obvious parallel between Riley’s condition and care and that of his human counterparts was intriguing and generated discussion, questions and concern from many of the children present.

An opportunity for the free flow of ideas, skin care tips and emotional support was provided with a long lunch and social time, augmented by men and women’s discussion groups in the afternoon. Karaoke for the kids provided during this time was a highlight of the event for many of the children, as well as their parents. FIRST is fortunate to have the volunteer resources necessary to host an event like the Houston mini-conference and looks forward to additional regional meetings in other parts of the country.

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