Today I attended sessions on children and adolescents with lupus. The presentations focused on bone health, puberty and sexual development, and quality of life measurements. One slide reminded us that children are not small adults, and that medications are not created or designed or tested in clinical trials with children; neither is the bone scan machine known as DEXA able to properly measure bone mass density in young people. And let's not forget that young people have different communication skills than adults; nowhere is this more important than in adherence to the medical regimens their doctors set forth. To paraphrase former U.S. Surgeon General C. Everett Koop, "medicine cannot help a person who does not take the medicine."
The emotional health of their young patients is also of great importance to physicians, as well as to parents. Being able to measure how young people feel about themselves and their disease can help them have successful adult lives with lupus. It was very heartwarming to see the dedication of pediatric rheumatologists - and equally disheartening to learn that there are so few to go around - not just in North America, but also throughout the world.
A lovely reception concluded the busy day, and allowed researchers, physicians, people with lupus and their loved ones, staff from patient advocacy groups, and friends to gather together in one of the convention center halls. Awards were presented to the Congress organizers, to the representatives of all the lupus groups, and to LFA staff member, Mary Crimmings. We were even treated to a snappy rendition of “Fever” by one of the lupus delegates from New Zealand - now that's an International Lupus Congress worth remembering!
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