12 Myths People Affected by Marfan Syndrome Want to See Busted
Approximately 1 in 5,000 people in the United States have Marfan syndrome, a genetic disorder that affects the body’s connective tissue. Connective tissue holds cells, organs and other tissues together, and it plays an important role in helping the body grow and develop properly.
People with Marfan syndrome are born with it, but features of the disorder differ and may pop up at different stages of development. While some features may be visible, like long limbs, flat feet and a curved spine, others, like aortic enlargement, are not. Because of the way the disorder varies from person to person, not much is understood about it — both within the medical community and the public.
Here’s what they had to say:
1. “You have to have ‘severe deformities’ to have Marfan syndrome.” —Michelle Haun
While many features of Marfan syndrome are visible (a tall and thin body type or a curved spine, for instance), many are not (heart problems, cataracts), and they can even differ among people in the same family who have the condition.
2. “You have to tick all of the boxes.” —Rose Goldstein
No one has every feature of Marfan syndrome, according to the Marfan Foundation, and people may have any combination of features. Some people develop certain features as adults, while others are born with them.
3. “Our experience is that no one has heard of Marfan syndrome. I wish there were myths.” —Ramona Sullivan
With Marfan Awareness Month, we’re hoping to change that.
4. “Someone has to be very tall to have Marfan syndrome.” —Rod Gray
While above-average height is common for those with Marfan syndrome, “each person is affected differently.”
5. “’Pretty’ girls and ‘handsome’ boys can’t get/have Marfan syndrome.” —Michael Waterman
Attractiveness has nothing to do with if you have or do not have Marfan syndrome. According to the Marfan Foundation, nearly half of people who have Marfan syndrome don’t even know it. People with Marfan syndrome, like anyone else, all have beautiful features inside and out.
6. “Just because my son is 6’4″, doesn’t mean he has to be a basketball player.” —Donna Gaus O’Sullivan
Almost every person with Marfan syndrome (or their loved one) who has heard the basketball question wishes you’d stop asking.
7. “There is a ‘look’ to people with Marfan.” —Paul Butterworth
A diagnosis is made after a physical exam, along with other tests, including an eye examination with a “slit lamp” evaluation, genetic testing and even a magnetic resonance imaging (MRI) of the lower back. There is no one “look” to Marfan syndrome because people with it are all individuals.
8. “People with Marfan syndrome have to be super skinny.” — Jami L Jasper
Refer to #7, please.
9. “My son can only have Marfans if I do.” —Nicole Caux
While 75 percent of people with Marfan syndrome inherit it, some people with Marfan syndrome are the first in their family to have it, which is a spontaneous mutation.
10. “‘Marfans is that thing with the long fingers.’ My dentist told me that was his understanding. When I explained it was ‘a little more involved than that’ and one sign is crowded teeth, he told me I was wrong.” —Helen Winskill
While long arms, legs and fingers are common features for those with Marfan syndrome, it’s much more than that. Did you know stretch marks and crowded teeth may also be found in people with the disorder? Invisible signs can include sudden lung collapse and eye problems, such as dislocated lenses and detached retinas.
11. “Marfan syndrome only affects the heart.” —Anna Katrina
Features of Marfan syndrome are most often found in the heart, blood vessels, bones, joints, and eyes, and while aortic enlargement is common, the lungs, skin and nervous system may also be affected.
12. “I read a comment once that someone said with Marfan Syndrome, you resemble Lurch [from ‘The Addams Family’ movies].” —Marlene Wyne Gallahan
Well, this obviously isn’t true.
What is a myth about Marfan syndrome that you’d like to see busted? Let us know in the comments below.