EXCHANGE: Ill. student lives with tissue disorder

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CHAMPAIGN, Ill. (AP) - In Kat Williams‘ ideal world, she’d be able to do more things teens her age do, like playing sports. And she’d stop herself from growing any taller.

“I will put a brick on my head to make myself stop growing,” she jokes with her mom.

At just a bit over 5 feet, 10 inches tall, Kat, 13, of Champaign, was born with Marfan syndrome, a connective tissue disorder characterized by a tall, thin build - and sometimes serious heart complications.

An eighth-grader at University Laboratory High School, Urbana, Kat was diagnosed with this genetic disorder when she was six years old, she and her mother, Ramona Sullivan, said.

Marfan syndrome also claimed the life of Kat’s father three weeks before she was born.

Kat’s early diagnosis means she’s gotten the care she’s needed to avoid life-threatening damage to her aorta, the main vessel that brings blood from the heart to the rest of the body.

But by the time her father, Lionel Williams, learned in his late 20s that he had Marfan, there had been too much heart damage already done by strenuous activities, among them playing football and basketball, and he died at age 31, Sullivan said.

Before her late husband was diagnosed with Marfan, Sullivan said, “we’d never heard of this.”

February is the national awareness month for Marfan syndrome, a condition that affects one in 5,000 people in the U.S. - though half of the people who have it haven’t been diagnosed, according to the National Marfan Foundation.

Recognizing Marfan early is important. When it goes undiagnosed and untreated, there’s up to 250 times the risk of a tear or rupture to the aorta, the foundation said.

After what happened to Kat’s father, Sullivan said she’s apt to walk right up to people she sees who look like they might have Marfan characteristics and ask them if they have heard of Marfan syndrome.

“I don’t want this to happen to anyone else,” she added.

Marfan affects the long bones of the body, which can lead to the tall, thin build, long arms, legs, fingers and toes and flexible joints. Other traits can include a spine that curves to one side (scoliosis) along with flat feet, teeth that are too crowded and a chest that sinks in or sticks out, according to the National Heart, Lung and Blood Institute.

Three-quarters of people who have Marfan syndrome inherit it from a parent, and those who have it stand a 50 percent chance of passing the altered gene along to each of their children.

Sullivan said her 18-year-old son, Matthew, didn’t inherit the condition.

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