Clinic places focus on genetic disorders

UAMS center to be one-stop resource

By Carolyne Park

Posted: August 4, 2009 at 7:32 a.m.

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LITTLE ROCK — Arkansas' first genetics clinic for adults opens today in Little Rock with a focus on treating people with genetic disorders and their specific medical needs.

The University of Arkansas for Medical Sciences Genetics Clinic on the sixth floor of the Freeway Medical Tower, 5800 W. 10th St., will be open five days a week and includes a clinic for Down's syndrome patients three days a week.

Down's syndrome is among the most common genetic disorders, affecting about 2,400 people in Arkansas and 350,000 people nationwide, according to the Arkansas Down Syndrome Association.

Association member Debby Kern of Little Rock said the clinic will be a resource for physicians and families statewide to find information and specialized medical services for complex disorders.

"It's going to open such doors for people around Arkansas," she said.

About one in every 733 babies born in the United States has Down's syndrome, according to the New York-based National Down Syndrome Society.

It's caused by a genetic mutation in which people are born with an extra copy of their 21st chromosome - one of the 23 pairs of chromosomes found in every human cell.

Suzanne Hicks, director of the Arkansas Down Syndrome Association, said the association has been working to get a specialized clinic for about six years.

Her 49-year-old daughter, Pamela, has Down's syndrome.

About seven years ago, Hicks took her daughter to a specialized clinic more than 650 miles away in Chicago. A lifelong athlete who loves swimming, dancing and horseback riding, Pamela Hicks was having chronic hip problems and needed a hip replacement. But doctors they spoke to in Arkansas were reluctant to operate because they'd never done the surgery on a Down's syndrome patient, she said.

It's a common challenge for families trying to find medical services for loved ones with Down's syndrome and other genetic disorders. Hicks said the association gets calls all the time from people with similar stories.

"A lot of doctors are reluctant to see these patients because they feel like they don't have the background," she said.

Dr. Kent D. McKelvey, UAMS associate professor and director of the new clinic, said it's particularly hard for people living in more remote parts of the state. While he sees hundreds of patients with Down's syndrome, doctors in some areas may have only one.

Many doctors don't have much experience or education on working with patients with genetic disorders, he said.

"There's just typically no teaching of medical genetics in our medical schools," McKelvey said. "You get a paragraph in medical school about Down syndrome or special needs, and that's all."

Medical genetics is a new profession that's allowing doctors to predict and in some cases prevent development of disease. It offers the potential for individualized treatments and medications.

While there's limited training in the field available now, demand for specialized services is rapidly growing, he said.

In addition to treating patients, the clinic's doctors will offer consultation for physicians around the state via a video-conferencing system. It will also provide hands-on experience for UAMS residents and fourth-year medical students who will rotate through the clinic, said McKelvey, who holds the UAMS Winthrop P. Rockefeller Chair in Clinical Genetics.

Funding for the new clinic is coming from UAMS and a gift for an undisclosed amount from the family of the late Winthrop P. Rockefeller, who served as Arkansas' lieutenant governor.

His widow, Lisenne Rockefeller, said in a statement that she hopes the clinic will provide "state-of-the-art medical and psycho-social care for adolescents and adults with Down syndrome."

She has both a son and an adopted daughter with Down's syndrome, and said she and her late husband wanted to help start a specialized clinic to serve families needing such services, as well as pay tribute to generations of families who have fought to improve services for people with Down's syndrome.

"We were very aware of the fact that our lives and those of all families with children with Down Syndrome were better today because of the parents who 30 or 40 years ago refused to get rid of their children," she wrote.

"Before then, children with Down Syndrome were routinely institutionalized, or worse."

The UAMS clinic will work in partnership with the genetics clinic at Arkansas Children's Hospital, McKelvey said.

Dr. G. Bradley Schaefer, director of UAMS' genetics division, which was founded last year, will be based at the new clinic with McKelvey.

They'll also coordinate with other specialists, including nutritionists, psychiatrists, social workers and physical therapists so that patients from around the state can come in for comprehensive annual visits rather than seeing several doctors in different offices.

McKelvey said he anticipates seeing patients at the new clinic within the next couple of weeks. Until then, he'll continue to see patients at UAMS or at another office in the Freeway Medical Tower.

Debby Kern's daughter, Melissa Kern, 32, also has Down's syndrome. She loves baking, coffee and dancing to the popular tunes of musicians like Shania Twain and the Dixie Chicks. A few years ago, Melissa Kern was hospitalized after suffering a stroke brought on by one of many diseases common in people with Down's syndrome.

It was a scary time, Debby Kern said, but it helped to have a doctor familiar with her daughter's syndrome and medical history.

Melissa Kern said having the new clinic will be "cool." She's been a patient of McKelvey's for about six years.

"He's like an uncle," she said.

Northwest Arkansas, Pages 7, 12 on 08/04/2009

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