Dallas-Fort Worth teen gets chance to connect with others with rare disorder

Starting in preschool, Kaitlyn Aldrich always towered over her classmates.

"People just always saw me as that tall, skinny girl," she said. "I learned how to deal with it."

By the time she got to middle school, Aldrich stood 5 feet 10 inches and weighed 88 pounds. Some people thought she was anorexic, but she knew different. Marfan syndrome, a connective tissue disorder, was the reason she stood out in a crowd.

Now 16, Aldrich, a junior at Byron Nelson High School in Trophy Club, had never met anyone else with the disorder that affects at least 200,000 people in the United States. But that changed this weekend when she attended the Marfan Foundation Conference in Houston, co-sponsored by Baylor College of Medicine and University of Texas Health Science Center.

The conference gave her the chance to see for the first time how others with the disorder cope with the many challenges it presents.

At the same time, the event will raise awareness of a condition that often goes undiagnosed until a serious complication occurs. Some 90 percent of people with Marfan syndrome have heart problems. For some that can lead to a fatal ruptured aortic aneurysm.

Diagnosing Marfan and treating the problems it causes are made all the more complicated because manifestations of the disorder, such as being tall, are found in the general population. Abraham Lincoln, Julius Caesar and Charles de Gaulle may have had the condition, according to the Marfan Research Foundation.

Aldrich was fortunate because the disorder was diagnosed when she was just 18 months old. As a baby she was large for her age and then shot up and became rail-thin, said her stepfather, Dan Clanton. Her long, flexible fingers, large hands and thin wrists are also signs of the disorder.

People with Marfan can live a normal lifespan, but throughout their lives, they must see specialists familiar with disorder, said Dr. John Jefferies, assistant professor of pediatric cardiology at the Baylor College of Medicine and Texas Children's Hospital in Houston.

There is no cure for Marfan, but many of the symptoms are treatable.

Aldrich takes medication for her heart and in 2002 had surgery to correct a protruding chest. Three years later, she underwent scoliosis surgery. The disorder prevents her from participating in strenuous exercise.

For Aldrich, it's the little things that make living with Marfan challenging.

"Pants are never long enough," she said. "And shoes are hard to find for my big feet, but that's a small thing."

But some advantages come with the disease.

"I think it's pretty much impossible for me to be overweight," Aldrich said. "That's a good thing."

Her height, which once made her self-conscious, has also turned into a perk.

"At concerts or Six Flags I can see over everybody's head," she said.

And lastly, Aldrich said it has made her a stronger person.

"I feel like I am lucky to look this way," she said. "It's made me more mature than the average 16-year-old."

JAN JARVIS, 817-390-7664