October is Down Syndrome Awareness Month

To read on The San Diego Union Tribune website:

Those with Down syndrome living longer, defying limits

Better  preventive care adds to quality life

From an 18-year-old model, who made her debut on the New York Fashion Week runway in September, to actress Jamie Brewer being featured in recent years on the TV anthology series “American Horror Story,” to a toddler in a Target ad in late 2014, those with Down syndrome have helped show the world in recent years that those with the condition can defy limits.

October is Down Syndrome Awareness Month. In addition to becoming a bit more prominent in mass media in recent years, those with the condition today have longer life expectancy, better preventive care and perhaps more acceptance in society.

The National Down Syndrome Society’s website said that one in every 691 babies born in the United States has Down syndrome, making it the most common genetic condition.

The website also said that about 400,000 Americans have Down syndrome, and about 6,000 babies are born with the condition each year in the U.S.

Down syndrome occurs when a person has a full or partial extra copy of chromosome 21. All people with Down syndrome have an extra portion of chromosome 21 in all or some of their cells’ DNA. The additional genetic material alters development.

The cause of the extra full or partial chromosome is still unknown, and Down syndrome can range from mild to severe, depending on the individual.

Those with Down syndrome share traits such as low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm.

Dr. Sheila Gahagan, a professor of pediatrics at the University of California, San Diego and Rady Children’s Hospital, said children born with Down syndrome can also suffer from a number of problems with their organs. She said roughly half of those with the condition have a heart defect. Hearing loss is also common, as are eye problems such as cataracts.

While, she said, nearly any organ can be affected by Down syndrome, not every child with the condition will suffer from these issues.

Most with Down syndrome have cognitive delays that are mild to moderate, which, she said, often translates to a lower IQ, but children with the condition often have well-developed social skills, meaning they can often function well with others.

When it comes to advancements made in recent years to help Down syndrome and their families, she said, one aspect that has changed a lot in the past decade is that screenings now happen during pregnancy. Because of improved testing, she said, most parents in the U.S. know prenatally if their child will be born with Down syndrome.

Meanwhile, she said in 2001, the American Academy of Pediatrics released recommendations for doctors to help meet the needs of children with Down syndrome. For one, she said, it’s common for kids with Down syndrome to have thyroid problems. Because doctors now look for thyroid problems during routine checkups, it has led to a higher detection rate, which is important to overall health, she noted.

When it comes to care, she said, local medical centers such as Rady have created support centers for children and families with Down syndrome. The Rady clinic, she said, houses specialists such as genetic counselors, physical and occupational therapists, dentists, speech therapists and social workers to help coordinate care with a team approach.

Care has come a long way since she became a pediatrician in the 1980s. At that time, she said some children with the condition were placed in institutions, “which would never happen today.”

“Our society has changed the way individuals with disabilities are treated overall,” she said. “Adults with Down syndrome are out in the community, you see people with Down syndrome in the grocery store and at the mall.”

Also, as medical technology has advanced, so has the life expectancy of those with Down syndrome.

Debra Emerson, CEO of El Cajon-based St. Madeleine Sophie’s Center, which educates and empowers people with developmental disabilities, said the life expectancy for those with Down syndrome has risen dramatically in recent decades from age 25 in 1983 to 60 today.

She credits the increase to early intervention, which improves outcomes for those with Down syndrome.

“There are a lot of myths out there on Down syndrome,” she said. “I think one main misconception is that people with Down syndrome have a short life span. Life expectancy has increased dramatically in recent years and is approaching the life expectancy of people without Down syndrome.” (…)

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