By James Thalman
Deseret News staff writer

      Cara Egan has told this story too many times to count:
      "So after we've been talking for a while about the medical and social issues of dwarfism and what I've done to try to raise awareness, this reporter says, 'So, you're a little person with a big heart.'

Kristina Nielson, left, Alex Loyless, Jenny Price and Andrew Montcingo dance at a party held at the Marriott Hotel as part of the Little People of America 2002 Conference in Salt Lake City on Monday. Jeremy Harmon, Deseret News

      "No. Clever phrase, but no," Egan responded. "We're little, but that doesn't mean our hearts are bigger or that we're cuter or sadder or sillier or nicer than anybody else."
      Egan doesn't mind being looked down on — that's the way of the physical world — but she can't stand condescension.
      "So many look at us with a combination of pity and fascination, and will even say that long 'aaaaaw' sound sometimes, like when they see a new baby or puppy," Egan said Monday between sessions of a weeklong national conference of Little People of America under way at the downtown Marriott. "There are people here with some really sad stories, but there are a lot more who don't have sad stories. There are college graduates, corporate executives and people with great-paying jobs and satisfying lives."
      The 45th annual conference is in honor of being little and a celebration of being different. It lasts a week so people of short stature have plenty of opportunity to get together and enjoy some people who really understand each other.
      "We're proud of the diversity we bring," said Egan, a Washington, D.C., resident and a former vice president of LPA. "Yes, we look a little different, but so do most people. We're just another piece of the pie."
      Dwarfism and related health issues are pretty rare, and often people with it will be the only ones in their community, Egan said. "So this gives us a chance to come together, share our lives, talk about issues and the latest medical and health information. And we're here to celebrate."
      The conference itinerary has three pages of single-spaced activities for conference attendees, who on Tuesday numbered 1,200; 1,500 are expected. There's dancing every night, fashion shows, concerts, makeovers, social hours, an art display, a softball game and a talent show.
      The agenda calls for a lot of serious discussions as well. Seminars will cover disability rights, sibling concerns, adaptive living, sexuality and employment. Families receive free medical examinations and share how they are overcoming physical barriers.
      New medical research on the more than 200 medical conditions known as dwarfism will also be presented. Because orthopedic complications are not unusual, what's new in orthopedic medicine is a central topic of discussion. Although dwarfs or other people of short stature often have some chronic medical complications, most have a normal life span.

Cara Egan, vice president of Little People of America, has worked to increase awareness of people of short stature. Jeremy Harmon, Deseret News

      Several workshops deal with day-to-day issues such as dating and marriage, how to customize a car and survival skills for children in school and support options for parents.
      Because dwarfism is a genetic condition, the LPA governing board is "deeply concerned" that as fetal genetic testing becomes more common, parents might chose to terminate a child with the condition. One of the main reasons for annual conferences is to show the general public that dwarfism is not a birth defect or a disability and that Little People can have full, productive lives.
      The conference will also discuss political efforts by the LPA, such as having ATM machines built so they are within reach of everyone, not just those more than 5 feet tall.
      "Things may not appear inaccessible but if they are out of reach, they are," Egan said. "We're not saying make special accommodations, we're just saying accommodate everybody."
      Things have come a long way since the first conference in 1957 when 21 people from nine states came. But the issues haven't changed too much. On the group's Web site, LPA founder and film actor Billy Barty is quoted that "first and foremost, we are people. We aren't subhuman, we didn't leap from the pages of a storybook or form an enchanted forest."
      The Web site also points out that the average height of adults with achondroplasia, a genetic condition that results in disproportionately short arms and legs, is 4 feet. Achondroplasia occurs at a rate of one in 14,000 births. The gene for the condition was discovered in 1994. The mutation, which especially affects the long bones, occurs early in fetal development.
      And the term "midget," often used for a proportionate dwarf, is considered offensive by most people of short stature, according to the Web site. Such terms as dwarf, little person, LP and person of short stature are all acceptable. "But most people would rather be referred to by their name than by a label."
      LPA has 5,000 members worldwide with 50 local chapters, including one in Utah. For more information call Beverly Wood at 801-224-2617 or visit www.lpaonline.org.

E-mail: jthalman@desnews.com