Marfan syndrome is a life-threatening genetic disorder that affects the body's connective tissues. Connective tissue is the glue that holds the body's cells and organs together. Connective tissues are vital to the growth and development of the human body. Since connective tissue is found throughout the body, Marfan syndrome can affect many body systems; Marfan syndrome can affect the heart, blood vessels, bones, joints, and eyes. About 1 in 5,000 people have Marfan syndrome, including men, women, and children of all races and ethnic groups. Without proper diagnosis and treatment, those affected with Marfan syndrome are at high risk of aortic dissection (a tear in the artery that takes blood away from the heart) and sudden death.
Some obvious features of Marfan syndrome are easier to see than others. These include:
- Long arms, legs, and fingers
- Tall and thin body type
- A curved spine (scoliosis or kyphosis)
- Chest that sinks in (pectus excavatum) or sticks out (pectus carinatum)
- Hypermobility in joints
- Crowded teeth because of narrow jaws and thin face
Other signs include the sudden collapse of a lung, enlarged aorta, severe eye problems that include dislocated lens, detached retina, early glaucoma, severe nearsightedness, and early cataracts.
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There are several disorders related to Marfan syndrome that cause people to struggle with the same or similar physical problems some of these are Ehlers-Danlos syndrome, Loeys-Dietz syndrome, Shprintzen-Goldberg syndrome, and MASS Phenotype, but there are several others.
Although there is no cure, knowing the signs of Marfan syndrome and the related disorders are vital because lives can be saved with early diagnosis and proper treatment.
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The Dallas/Fort Worth Community Group of the Marfan Foundation would like to extend an open invitation for all of those who would like more information or to meet with others who have been diagnosed or think they have the signs of Marfan syndrome or a related disorder. Please feel free to attend one of our upcoming events or meetings and watch for future announcements on Patch.com. Contact Sheilah @ 972-400-0863 or at momrulz9294@aol.com for information on joining the DFW Community Group of the Marfan Foundation.