Have You ever herd of the Marfan Syndrome ?

I have the Marfan Syndrome and was wondering how well known it is. Most people and Doctors have never herd of it and I am trying to spread the word to save lives.

Hi there...Wanna read more...please follow the link in the "Sources Box". ;)

Heart Disease:
Marfan Syndrome

Marfan syndrome is an inherited disease that affects the connective tissue. Connective tissue is the most abundant tissue in the body and is a vital component to supporting the body's organs. Its primary purpose is to hold the body together and provide a framework for growth and development. It provides the strength and support to tendons, cartilage, heart valves and many other parts of the body, as well as strength and elasticity to the blood vessels.

For people with Marfan syndrome, the chemical makeup of the connective tissue isn't normal and as a result is not as strong as it should be.

Because connective tissue is found throughout the body, Marfan syndrome can affect many parts, including the bones, eyes, heart and blood vessels, nervous system, skin and lungs.

What Causes Marfan Syndrome?

Marfan syndrome is caused by a defect in the gene that encodes the structure of fibrillin and the elastic fibers, major components of connective tissue that appear to contribute to its strength and elasticity.

In most cases, Marfan syndrome is inherited. The pattern is called "autosomal dominant," meaning it occurs equally in men and women and can be inherited from just one parent with the disorder. People with Marfan syndrome have a 50% chance of passing along the disorder to their children. In rare cases, a new gene defect occurs due to an unknown cause. Marfan syndrome is also referred to as a "variable expression" genetic disorder, since everyone with Marfan syndrome has the same defective gene, but not everyone experiences the same symptoms to the same degree.

Marfan syndrome is present at birth. However, the condition may not be diagnosed until adolescence or young adulthood. It is fairly common, affecting 1 in 5,000 Americans. It is found in people of all races and ethnic backgrounds.

What Are the Signs of Marfan Syndrome?

Sometimes Marfan syndrome is so mild, few, if any, symptoms occur. In most cases, the disease progresses with age and symptoms become noticeable as the changes in connective tissue occur.

On the outside, people with Marfan syndrome are often very tall and thin. Their arms, legs, fingers and toes may seem out of proportion, too long for the rest of their body. Their spine may be curved and their breastbone (sternum) may either stick out or be indented inward. Their joints may be weak and easily become dislocated. Often, people with Marfan syndrome have a long, narrow face and the roof of the mouth may be higher than normal, causing the teeth to be crowded. More than half of all people with Marfan syndrome have eye problems.

Internally, many changes occur within the body structures due to the abnormal connective tissue. About 90% of people with Marfan syndrome develop changes in their heart and blood vessels:

Yes. Vincent Schiavelli had it. Wikipedia has a good article on it.

Sorry to hear you were diagnosed with this syndrome. Good luck getting the word spread.

I am.a nurse and am familiar with Marfan's. There are wide variations in the manifestations of the condition from person to person. Many famous people had/have Marfan's..Abraham ,Lincoln, Charles De Gaulle (pres. of France), Rachmaninoff (Russian Composer), and Osama Bin Laden! There are many web sites with good info including Marfan. org and the Wikipedia Encyclopedia. Hope you get good care and do well.