National Marfan Foundation (NMF) What is Marfan?
	Oregon Chapter of Marfan (We donate to the NMF.  This site is posted FYI.)
	Newspaper Article about Athlete with Marfan syndrome (The following article is used here with permission from Frank DiLeo of the Daily Record)

WHAT IS MARFAN?

(After reading about Marfan syndrome below, if you wonder if you might have this condition, there is a simple test that your ophthalmologist can do.  The next time you have your eyes checked, ask your doctor to check for Marfan syndrome, and the doctor should be able to let you know the result immediately.)

Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.

Marfan syndrome affects men, women and children, and has been found among people of all races and ethnic backgrounds. It is estimated that at least 1 in 5,000 people in the United States have the disorder.

Marfan syndrome affects people in different ways. Some people have only mild symptoms, while others are more severely affected. In most cases, the disorder progresses as the person ages. The body systems most often affected by Marfan syndrome are:

(CHARACTERISTICS OF PEOPLE WITH MARFAN -- text taken from the NMF website)

Skeleton - People with Marfan syndrome are typically, but not always, very tall or taller than unaffected people in their family, slender, and loose jointed.  Marfan syndrome affects the long bones of the skeleton. Therefore the arms, legs, fingers, and toes may be disproportionately long in relation to the rest of the body.  A person with Marfan syndrome often has a long, narrow face, and the roof of the mouth may be arched, causing the teeth to be crowded. Other skeletal abnormalities include a sternum (breastbone) that is either protruding or indented, curvature of the spine (scoliosis), and flat feet.

Eyes - More than half of all people with Marfan syndrome experience dislocation of one or both lenses of the eye. The lens may be slightly higher or lower than normal and may be shifted off to one side. The dislocation may be minimal, or it may be pronounced and obvious. Retinal detachment is a possible serious complication of this disorder. Many people with Marfan syndrome are also nearsighted (myopic), and some can develop early glaucoma (high pressure within the eye) or cataracts (the eye's lens loses its clearness).

Heart and blood vessels (cardiovascular system) - Most people with Marfan syndrome have problems associated with the heart and blood vessels. The valve between the left chambers of the heart is defective and may be large and floppy, resulting in an abnormal valve motion when the heart beats. In some cases, the valve may leak, creating a "heart murmur," which a doctor can hear with a stethoscope. Small leaks may not cause any symptoms, but larger ones may result in shortness of breath, fatigue and palpitations (a very fast or irregular heart rate). Because of faulty connective tissue, the wall of the aorta (the large artery that carries blood from the heart to the rest of the body) may be weakened and stretch, a process called aortic dilation. Aortic dilation increases the risk that the aorta will tear (dissect) or rupture, causing serious heart problems or sometimes sudden death.

Nervous system - The brain and spinal cord are surrounded by fluid contained by a membrane called the dura, which is comprised of connective tissue. As people with Marfan syndrome get older, the dura often weakens and stretches, then begins to weigh on the vertebrae in the lower spine and wear away the bone surrounding the spinal cord. This is called dural ectasia. These changes may cause only mild discomfort or may lead to radiated pain in the abdomen or to pain, numbness or weakness of the legs.

Skin - Many people with Marfan syndrome develop stretch marks on their skin, even without any significant weight change or pregnancy. These stretch marks can occur at any age and pose no health risk. The stretch marks tend to appear at sites subject to stress such as shoulders, hips and lower back. The stretch marks require no treatment. In addition, people with Marfan syndrome are also at increased risk for developing an abdominal or inguinal (groin) hernia where a bulge develops that contains part of the intestines. This requires medical treatment.

Lungs - Although connective tissue abnormalities make the tiny air sacs within the lungs less elastic, people with Marfan syndrome generally do not experience noticeable problems with their lungs. If, however, these tiny air sacs become stretched or swollen, the risk of lung collapse (spontaneous pneumothorax) may increase. Rarely, people with Marfan syndrome may have sleep-related breathing disorders such as snoring or sleep apnea (a sleep disorder characterized by brief periods when breathing stops).