BIRMINGHAM, Ala. - Thirty-five-year-old Ingrid Kidd was delighted to find that she was the 100th patient to be enrolled at the Adult Down Syndrome Clinic at the University of Alabama at Birmingham (UAB). The Shelby County native considered the recognition an honor and the party that accompanied it - complete with cake and punch - a fun way to begin a doctor's visit. For her mother Bonnie and sisters Kietra and Gretchen, it was assurance that Ingrid will receive the medical care she needs as she ages.
The clinic, which began seeing patients in July 2007, is one of the few in the nation dedicated to providing services to adult patients with Down Syndrome. Because of improvements in diagnosis, treatment and management of the condition while young, Down Syndrome patients now are routinely living well into adulthood and have many of the same risks for adult diseases as the rest of the population.
"Children's hospitals, pediatricians and our medical system have done such a wonderful job in caring for children with Down Syndrome that many are now living into their 40s, 50s or older," said clinic director Edward J. Lose, M.D., assistant professor in the UAB Department of Genetics. "Our clinic provides services related to their Down Syndrome, but also make recommendations for general adult conditions they may be facing - from a serious illness to a bout with a common cold."
Adult Down patients often have issues with sleep apnea, obesity, hearing and vision loss, thyroid problems and vitamin D deficiencies. Aging seems to be accelerated.
Lose says many Down patients do have their own primary-care physicians and receive excellent care, although that's more likely to be the case in metropolitan communities such as Birmingham than in rural areas of the state.
"For those patients with a primary-care doctor, our clinic is designed simply to help treat facets of their Down Syndrome," he said. "But for those without a primary-care physician, we can facilitate getting them tied in with one and finding the needed specialists."
Ingrid Kidd has a good primary-care physician in Columbiana, but the comprehensive and thorough nature of the UAB clinic appealed to her family. On the day of her recent visit, Ingrid was seen by occupational and physical therapists, a nutritionist, a family physician and Lose. Other specialists available as needed through the clinic include speech/language pathologists, audiologists and social workers. A psychiatric evaluation is available when necessary.
While Ingrid was at the clinic for the first time, Peter Watson was there for his fourth visit. Peter is 62, although he looks older. He's now in a wheelchair, which presents a new set of health issues for his caregivers.
"He used to be quite active, quite the dancer, until a few years ago," said sister and caregiver Julia Copeland.
Peter has a primary-care physician and sees a neurologic specialist, but now that he's in a wheelchair, weight gain and the prevention of pressure ulcers are concerns that the clinic staff are helping to address. The clinic will assist the group home where Peter lives to obtain equipment necessary for his continued care.
Lose says the clinic, held two days a week, sees patients from Alabama and surrounding states. It is funded by a grant from the UAB Health Services Foundation and the generosity of the parent support group Parent Advocates Down Syndrome (PADS). The John Mark Stallings Fund recently was established to endow the clinic and sustain funding. The PADS major fund-raising effort, The Buddy Walk, will take place at Regions Park on Oct. 18.
Down Syndrome is one of the most common genetic conditions, occurring in approximately one out of every 733 live births and affecting more than 350,000 people in the United States.
"We're excited to have now reached our 100th patient," said Lose. "It's a significant milestone, but there are a great many more people with Down Syndrome in Alabama and the surrounding region who could benefit from our services. We just have to reach them."
About the Adult Down Syndrome Clinic at UAB
The Adult Down Syndrome Clinic at UAB is one of the few clinics of its type in the nation. Serving individuals with Down Syndrome, beginning at age 16, the clinic strives to help these individuals achieve their best possible health and well-being. Using a multidisciplinary team approach, individuals with Down Syndrome are evaluated by a family physician, a geneticist, audiologist, social worker, occupational therapist, speech therapist, physical therapist and a nutritionist.