Famous people thought to have Marfan Syndrome:
President Abraham Lincoln
John Ritter, actor
Jonathan Larson, writer of musical “Rent”
Flo Hyman, Olympic athlete, volleyball
Vincent Schiavelli, actor
Robert Johnson, blues musician
Andre The Giant, wrestler and actor
Michael Phelps, Olympic athlete, swimming
Source: World Wide Web
To learn more about Marfan sydrome and other connective tissue disorders, visit www.marfan.org.
Samantha DeLong has been known to approach the particularly tall people she meets.
The 23-year-old Gainesville woman is able to recognize the tell-tale appearance of other people who likely have Marfan Syndrome, a genetic disorder that is typically linked to tall, lanky people.
Since learning about the disease more than a year ago, DeLong is eager to share her experience, which started with a pain in her back.
While at a friend’s house in June 2012, DeLong’s lower back began to ache. The pain became too much to ignore and she asked her mother, Tanya DeLong, to take her to the emergency room.
“I blacked out about 15 minutes after I got to the hospital,” Samantha DeLong said.
Her aorta, a major blood vessel, had dissected.
“Basically, the inner lining of it comes unraveled and it bleeds out,” Samantha DeLong said. “Mine was bleeding out from my kidneys. That’s what caused the lower back pain that made me go to the hospital.”
DeLong underwent surgery with doctors replacing the damaged part of her aorta. She was kept in a medically induced coma in the intensive care unit of Northeast Georgia Medical Center for nearly a month to heal.
Her mother kept a diary of her daughter’s ordeal in the hospital. Tanya flipped through the pages of her diary and laughed. She said she’s trying to convince her daughter to write a book about the “crazy dreams” she had while in the coma.
“I started it a week or two after because I saw she wasn’t getting out of this anytime soon,” she said. “I thought ‘Well, she may not live.’ I wanted to document what we went through, if she made it through. I truly expected her not to pull out.”
The first time Tanya noticed her daughter was “in another world” was in the first days at the hospital. While preparing for surgery, Tanya asked her daughter if she knew where she was.
“She said ‘Of course, I’m in the library in North Carolina and I’m getting my nose done and my hair done,’” Tanya said, smiling. “I was like ‘Oh wow. You’re a little off.’”
Samantha recalls having intense dreams and trying unsuccessfully to wake herself up until she was finally able to July 4.
“I never met anyone who was in a coma and then came out of it,” Samantha said. “I flat lined a couple of times so I don’t know if what I went through was normal.”
Dr. Heather Westmoreland, who did not treat DeLong but was familiar with her case, said the young woman was fortunate her dissection occurred in the place where it did. Had the dissection happened on the ascending portion of her aorta it would have likely resulted in sudden death.
“Most people that have it have a dissection and die,” Tanya said. “That’s how they find out they have (Marfan).”
Marfan Syndrome affects the connective tissues in the body. Because every part of the body is made with connective tissues, the condition can have major life altering impact.
“It is something you can express in different ways physically,” said Westmoreland, a cardiologist at the Northeast Georgia Heart Center and cardiovascular imaging director at Northeast Georgia Medical Center. “You could have a mild form where you only express a few of the symptoms or you could have a severe form. It can affect heart valves, the aorta, the lungs and eyes, spinal cord and skeletal (system).”
According to The Marfan Foundation, www.marfan.org, about 200,000 people have Marfan or a related connective tissue disorder in the United States. But nearly half of those do not know they have it or haven’t been diagnosed. The condition affects about 1 in 5,000 people regardless of gender, race or ethnicity.
Samantha DeLong said her doctors often tell her they would never have thought she would have Marfan if it weren’t for her aorta dissecting last summer.
People with typical Marfan are often tall and lanky, with large hands and feet.
Westmoreland said it’s not certain President Abraham Lincoln had Marfan, but his appearance — tall, thin, long fingers and disproportionate arms — is typical of those with the condition.
However, those with Marfan or a slight variant of the condition may not have the typical Marfanoid appearance. Samantha DeLong is 6’2” and wears a size 14 shoe, but she still falls into the atypical category. She is working toward a diagnosis which requires several tests. She is the only member of her family with the condition, which suggests her condition is caused by a mutant gene.
Since her month in the hospital, Samantha DeLong has a new appreciation for her life and the people she loves.
“I spend more time with my family,” she said. “I don’t worry about things like I used to do.”
In an effort to learn more about the condition, the Gainesville woman attended an annual Marfan and Connective Tissue Disorder Conference in California during the summer. She said just meeting other people like herself was a “blessing in itself.”
While there she learned more about the condition and hopes to share her knowledge with those she meets. Though she said she is taking a much more calm approach when she walks up to tall people theses days.
Tanya DeLong laughed as she recalled the first time her daughter walked up to a tall, young girl in the movie theater.
At first, Tanya told her daughter she couldn’t just walk up to people and give them information, because it “freaks people out.”
“But she just said ‘I don’t care, if it saves (them) from going through the month and half that I went through or dying, I don’t care.’”