News and Events News Archive

2002 National Conference Summary: Saturday Evening

More than 400 people from 29 states and Canada gathered in Orlando, Fla., Aug. 9-11, for the 2002 National Conference. For everyone, the theme of the conference was the same: connecting with people and knowledge.

To illustrate the conference theme, here is a description of some of the events that took place and the people who were there.

Friday

Saturday: morning afternoon evening

Sunday

Saturday, 6:30 p.m.
Chartered buses bearing about 330 of the conference attendees arrived for a special evening social event--a mystery theater dinner--at SeaWorld's Ports of Call.

At least one attendee, Lillian Hansen, was seen clearly having a ball-running around outside; running around inside; smiling at everyone who said "Hi" and, of course, not listening to her mother. Well, she's just 2.

Lillian's energy is a little surprising though, explains Shana, since her daughter is only sleeping about eight to nine hours a day. Lillian's doctors tell her it is a side effect of her oral steroid treatment, Shana said.

By far the youngest attendee with psoriasis at the conference, Lillian was born with psoriasis on her face. Within a few days it covered her arm and bottom, and within a few weeks, it was everywhere. At first, the doctors recommended ointments.

When Shana started feeding her solids, however, she noticed blood streaks in her spit-up. A scope revealed the psoriasis had developed in her esophagus. Doctors tried Soriatane, a prescription oral retinoid. That didn't work; then cyclosporine, which did.

Lillian has been weaned off the cyclosporine and is now taking a combination of oral steroids and infliximab (brand name Remicade). Her difficulties continue, but for the time being she seems to be doing better, Shana said.

"I wanted to tell other people our experiences in case there are other parents out there with young children with psoriasis," she said.