Messenger - Vol. 3, No. 3, Page 20 Spring 1994 Alumni Profile Counselor deciphers genetic legacy You could say that Linda Taylor Nicholson, Delaware '75, '81M, has built a career on inheritance. Not the "green" kind. The gene kind. As a genetic counselor at the A.I. duPont Institute, a children's hospital in Wilmington, Del., Nicholson helps families understand the cause and progression of hereditary diseases, from dwarfism to cystic fibrosis. She also helps them assess the risk that a disorder will be passed down in later generations. A lifelong resident of Delaware, Nicholson became interested in genetics as an undergraduate at the University of Delaware. "At that time, genetic counseling was a very young field," she says. While genetic research involves "extracting DNA and laboratory stuff," she says, genetic counseling involves working closely with the geneticist as a diagnosis is made and helping the family understand and cope with the information. According to Nicholson, a common concern is, "Will my other kids have this too?" To answer that question, she obtains a medical history from the affected family and constructs a family tree. Genetic counselors review the family history, assist with the exam of appropriate family members and suggest any additional laboratory tests or X-rays that might be needed to confirm a diagnosis. There also are many emotional needs that are part of a family's experience, and the genetic counselor serves them as well, she says. "Many times, the diagnosis comes as a surprise," says Nicholson. "People of average height are often shocked, for example, to learn their infant is affected by dwarfism. 'How could this happen to us?' is a typical reaction," she says. "I help them understand how it happened and then how to deal with it." When she entered the University, Nicholson says she expected to go on to medical school, but that plan changed as a result of what she calls "a disagreement with organic chemistry." Her adviser, Arnold Clark, now professor emeritus of life and health sciences, was instrumental in developing her interest in genetics, she says, and after graduating with a degree in biology, she received a master's in counseling at Delaware and a master's in genetic counseling from Rutgers University. A member of the board of the National Society of Genetic Counselors for the past four years, she has been at the institute for the last 17. The institute serves children with life-threatening illnesses, chronic diseases, multiple disabilities and complex health problems. There are more than 4,000 single gene disorders, in addition to multiple chromosomal problems. Many of these disorders are treated at the institute, including bone dysplasia (dwarfism), Marfan syndrome (excessively tall people), muscular dystrophy, cystic fibrosis, Down syndrome and spina bifida. Counseling children with dwarfism and their families has been one of Nicholson's major responsibilities. Achondroplasia, a form of dwarfism, is one of the most common bone disorders. It affects bone growth, not life expectancy or intelligence, she says. Due to a single, dominant gene, achondroplasia occurs at the time of conception. "There are 100,000 genes in most people, and only 8 or 9 may be really harmful," Nicholson says. Traditionally, a popular distinction is made between midgets, who are proportionately short, and dwarfs, whose heads and trunks are large in proportion to their arms and legs. The new "politically correct" term refers to a dwarf as a "little person," just as retarded children may be referred to as "developmentally delayed," Nicholson says. In counseling families, Nicholson explains that if an individual with achondroplasia has children, there is a 50 percent chance the children will inherit the disorder. This chance is increased to 75 percent if the partner also has achondroplasia. "There also are complications related to having children, but these are mainly related to the birth itself," she says. Nicholson offers everyday, practical advice to her young little people, as well. For example, if a youngster has trouble reaching down to pull up clothing, she recommends such devices as special loops and Velcro attached to the pants, which have proven effective for other patients. "Those affected with achondroplasia can lead happy and productive lives," she says. She counts among her former clients doctors, lawyers, teachers and musicians. While attending the University, Nicholson met her husband, Michael Larkin, Delaware '73, a published composer and chairperson of the voice department at the Wilmington Music School. Linda sings for and Michael conducts the New Ark Chorale. The couple live in north Wilmington with Nicholson's 12-year- old son, Daniel. -Michael W. Hail, Delaware '95 Ph.D.