FEBRUARY IS MARFAN SYNDROME AWARENESS MONTH

PRESS RELEASES   2/1/2021

It is estimated that at least 1 in 5,000 people in the United States have Marfan syndrome. The Marfan syndrome affects men, women and children, and has been found among people of all races and ethnic backgrounds. What is Marfan Syndrome? The 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 the Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, the Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs. Characteristics: The Marfan syndrome affects people in different ways. In most cases, the disorder progresses as the person ages. The body systems most often affected by the Marfan syndrome are: Skeleton- People with the Marfan syndrome are typically, but not always, very tall or taller than unaffected people in their family, slender and loose jointed. The 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 the 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 the 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. Heart and blood vessels (cardiovascular system)- Most people with the 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. 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 The 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. These changes may cause only mild discomfort or may lead to radiated pain in the abdomen or to numbness or weakness of the legs. Skin- Many people with The 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. Lungs- Restrictive lung disease, primarily due to pectus abnormalities and/or scoliosis, occurs in 70 percent of persons with MFS. For more information on Marfan syndrome, please visit their website, www.marfan.org.