UAB Adult Down Syndrome Clinic

This is a recent article on the Adult Down Syndrome Clinic at UAB. I tried to copy the photo but was unsucessful. But if you click on the health & fitness link you can see the happy couple. The three categories that Dr. Lose refers to is astounding to me. It also goes to show how times are changing and most importantly it goes to show how capable HUMANS who are diagnosed with DS can accelerate in life. They just need guidance, support, understanding and A LOT of love. Edie has already shown us in her short 1 1/2 years what wonderful things she can do some with little assistance. As a matter of fact - she picks up most things all by herself. I have already noticed since being back from a trip that she is now stacking blocks, trying to comb her own hair, brushing her own teeth (well maybe just chewing on the toothbrush) and just this morning she found a pair of shoes and tried to put it on her foot! She is talking a lot too! I know Edie will have a happy fulfilling life I just can't wait to see what her generation will be doing 20 years from now!

§ UAB clinic helps adult Down syndrome patients make progress
Posted by Dave Parks -- Birmingham News June 25, 2009 5:45 AM
Categories: Health & Fitness
Dave Parks/Birmingham News
Heather Larkin and Cody Pope share a happy moment while taking a break recently from medical evaluations at UAB's Down syndrome clinic for adults. Larkin and Pope are both from Tuscaloosa. The clinic is one of a few in the U.S. for adults with Down syndrome. It has been open for about two years, and provides a wide variety of specialized care.
Cody Pope used to be an Auburn University football fan.
"Not any more," he smiles.
That's because his girlfriend, Heather Larkin, is a University of Alabama football fan, and Pope switched loyalties so they would have more in common.
"That's what happy couples are all about," he says. "We are officially a couple."
But Pope and Larkin, both 22 and from Tuscaloosa, have something else in common. They were both born with Down syndrome, a genetic condition that accounts for the largest group of intellectually deficient people in the United States -- more than 400,000 men, women and children.
Pope and Larkin came in recently for evaluation together, with family members, at the University of Alabama at Birmingham's Down syndrome clinic for adults, one of only a few such clinics in the country.
Medical breakthroughs, particularly open-heart surgery, have extended the average lives of people with Down syndrome from about 19 years old in 1969 to 60 years old today. But a longer life span has created another challenge -- providing special care for adults with Down syndrome.
Caused by an extra chromosome 21, Down syndrome is linked to a multitude of health problems such as hearing loss, heart malformations, high blood pressure, digestive problems and vision disorders. Those with the condition are also prone to early aging and dementia.
People with Down syndrome have distinctive facial features and often are short in stature. The syndrome is usually accompanied by mild to moderate intellectual disability; occasionally the disability is severe.
Dr. Edward Lose, director of the clinic at UAB, said it is important to get adults with Down syndrome into the medical system and connected to a primary care physician.
That can be tough because providing medical care for somebody with Down syndrome require patience, time and wide variety of tests and evaluations.
"It's a lengthy process," he explained. "These people are here for hours."
Also, many doctors are reluctant to accept them as patients because most are covered by Medicaid, a state-operated insurance plan that pays relatively low rates.
The UAB clinic opened two years ago, and so far has evaluated only 75 patients. The clinic has served mostly as a consultant for the patients' regular doctors and has found primary care doctors for some patients.
"There have got to be more than 75 people with Down syndrome in Jefferson County alone," Lose said. "My major concern so far is we really don't know who's out there."
Unfortunately, the history of caring for people with Down syndrome is riddled with neglect. In the past, babies with Down syndrome were often allowed to die, and doctors viewed medical treatment as futile, Lose said.
Even today, the vast majority of women who undergo genetic testing during pregnancy will undergo an abortion rather than have a baby with Down syndrome, according to studies.
Still, there has been a general movement toward acceptance of people with Down syndrome and appreciation of their value as human beings. Most recently, the life and death of John Mark Stallings, the son of former University of Alabama football coach Gene Stallings, touched the hearts of people in this state.
Lose said there is generally a correlation between age and how well a patient with Down syndrome is doing. He sees them falling into three groups:
• Patients older than 45. "They had very little medical care. They also had very little education. They're not doing very well. Some of them have had all their teeth pulled, things like that."
• Patients in their late 20s to 45. "They do better. Their medical treatment was better. Their education was better, although for some of them education was a blank piece of paper and a box of crayons."
• The youngest group of adults. "They are doing very well. They are active, loving members of their families."
Most patients he sees are employed, sometimes in unusual jobs. One patient worked as Chuck E. Cheese in a restaurant, entertaining children.
"They're excellent workers," Lose said. "Unlike all of the rest of us, they love to go to work every day."
The UAB clinic opened with the help of a two-year grant and support from Parent Advocates Down Syndrome. The grant, which provides about $55,000 a year, runs out next spring.
PADS has provided $25,000 in seed money to create an endowment fund named after John Mark Stallings, and contributions are needed, Lose said. The clinic operates two days a week, and Lose would like it to open five days a week.
"We need at least $5 million and probably $20 million in the endowment," he said. "We will do it. I have a feeling that things will come through for us. It may take awhile."
To contact the UAB clinic for adults with Down syndrome, call 205-335-9385.

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