Features of Marfan syndrome:

Tall, thin stature - Long fingers - Unusually long arms and legs - Curvature of the spine (Scoliosis) ~ Chest bone that sticks in or out ~ Flexible joints ~ Crowded teeth ~ Nearsightedness ~ Dislocated lenses ~ Stretch marks (not due to pregnancy) ~ Collapsed lung ~ Aortic dilation ~ Aortic dissection ~ Mitral valve prolapse ~ Leaking valves in the heart

Valentine’s Day - Matchmakers (A Chicago Tall Club is featured)

February 15th, 2007 by Jeanette

Matchmakers on Fox Chicago
For some people., Valentine’s Day is filled with sweet candy and beautiful flowers.For others–nothing but wilting memories of romance gone sour.

<em>I know at least one Marfan individual and one Loeys-Dietz individual featured in the Tall Club segment.</em>

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Loeys-Dietz Syndrome

January 28th, 2007 by Jeanette

Loeys-Dietz Syndrome
Loeys-Dietz syndrome is an inherited disorder which affects blood vessels in the body, especially the aorta (the largest artery). It was first described in the medical literature in August 2006. Some symptoms of Loeys-Dietz syndrome are similar to those of Marfan syndrome or Ehlers-Danlos syndrome.

I believe this is a new entry for About.com

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Largest Review To Date Of Loeys-Dietz Syndrome

August 27th, 2006 by Jeanette

Largest Review To Date Of Loeys-Dietz Syndrome
At least three severe, potentially fatal genetic diseases leave patients with aortas so flimsy that they can rupture in pregnancy and labor or even lesser activities, often without warning. Beta blockers, curbing exercise, proactive blood vessel surgery and other approaches can be helpful, but their usefulness varies according to which disease and when they’re offered.

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HHMI News: Early Surgery Recommended for Those with Life-Threatening Vascular Disorder

August 26th, 2006 by Jeanette

HHMI News: Early Surgery Recommended for Those with Life-Threatening Vascular Disorder
According to a new study of patients with a life-threatening condition known as Loeys-Dietz syndrome (LDS), children with the inherited vascular disorder should be considered early candidates for surgery to prevent lethal rupture of the aorta, the heart’s main artery.

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Mutations Distinguish Overlapping Aortic Aneurysm Syndromes - CME Teaching Brief® - MedPage Today

August 24th, 2006 by Jeanette

Mutations Distinguish Overlapping Aortic Aneurysm Syndromes - CME Teaching Brief® - MedPage Today
GHENT, Belgium, Aug. 24 — Not so long ago there was just Marfan’s syndrome as an aortic-aneurysm genetic disorder. Now two others have emerged with overlapping signs and symptoms, and there are clinical implications to sorting the three out.

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New, Deadly Relative of Marfan’s Syndrome Discovered - Forbes.com

August 23rd, 2006 by Jeanette

New, Deadly Relative of Marfan’s Syndrome Discovered - Forbes.com
WEDNESDAY, Aug. 23 (HealthDay News) — A connective tissue disease that is a molecular cousin of Marfan’s syndrome, but even deadlier, has been discovered by an international team of medical researchers.

The disease has been christened Loeys-Dietz Syndrome, after researchers Dr. Bart L. Loeys of the Center for Medical Genetics in Ghent, Belgium, and Dr. Harry Dietz, of Johns Hopkins University School of Medicine in Baltimore. Like Marfan’s syndrome, it is caused by a genetic flaw that weakens tissue and can kill suddenly by rupturing the aorta, the main artery of the heart.

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Saying `aah’ helps unlock a genetic secret - Loeys-Dietz

May 19th, 2006 by Jeanette

“[14-year-old] Kyle has a split uvula, one telltale sign of the genetic disease Braverman had learned about at a conference on Marfan’s syndrome, a related genetic disease.

Researchers from Baltimore described the new disease, Loeys-Dietz aortic aneurysm syndrome, just last year. The diagnosis has had immediate consequences for Kyle and dozens of other people with the syndrome. That’s unusual in the realm of genetics and medicine. Often it can take years or decades for a discovery in a genetics lab to translate into improved care for patients.”

Read article

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Recognizing new aneurysm syndrome can save lives : Mice-

June 3rd, 2005 by Jeanette

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Recognizing new aneurysm syndrome can save lives : Mice-: “Based on a review of medical records and experience with new patients, the Johns Hopkins team discovered that people with wide-set eyes, a cleft palate or split uvula (the tissue that hangs down in the back of the throat), and a torturous arrangement of the body’s blood vessels also have aggressive swelling of the aorta, the body’s biggest blood vessel. In these patients, the aorta breaks at a much smaller size than it does in people with Marfan syndrome or other causes of aneurysm, making identifying these patients critical, the researchers report.”

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Recognizing New Aneurysm Syndrome Can Save Lives

January 30th, 2005 by Jeanette

Recognizing New Aneurysm Syndrome Can Save Lives: “A research team led by Johns Hopkins doctors has defined the physical traits and genetic basis of a new aortic aneurysm syndrome that is extremely aggressive and can cause death in early childhood. “

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