Tag Archives: save lives

Marfan Syndrome Awareness

Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.

Connective tissue is made up of proteins. The protein that plays a role in Marfan syndrome is called fibrillin-1. Marfan syndrome is caused by a defect (or mutation) in the gene that tells the body how to make fibrillin-1. This mutation results in an increase in a protein called transforming growth factor beta, or TGF-β. The increase in TGF-β causes problems in connective tissues throughout the body, which in turn creates the features and medical problems associated with Marfan syndrome and some related disorders.

Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body, as well. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. The lungs, skin and nervous system may also be affected. Marfan syndrome does not affect intelligence.

Who has Marfan syndrome?
About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. About 3 out of 4 people with Marfan syndrome inherit it, meaning they get the genetic mutation from a parent who has it. But some people with Marfan syndrome are the first in their family to have it; when this happens it is called a spontaneous mutation. There is a 50 percent chance that a person with Marfan syndrome will pass along the genetic mutation each time they have a child.

Knowing the signs of Marfan syndrome can save lives
People with Marfan syndrome are born with it, but features of the disorder are not always present right away. Some people have a lot of Marfan features at birth or as young children – including serious conditions like aortic enlargement. Others have fewer features when they are young and don’t develop aortic enlargement or other signs of Marfan syndrome until they are adults. Some features of Marfan syndrome, like those affecting the heart and blood vessels, bones or joints, can get worse over time.

This makes it very important for people with Marfan syndrome and related disorders to receive accurate, early diagnosis and treatment. Without it, they can be at risk for potentially life-threatening complications. The earlier some treatments are started, the better the outcomes are likely to be.

Knowing the signs of Marfan syndrome can save lives. Our community of experts estimates that nearly half the people who have Marfan syndrome don’t know it. This is something we are working hard to change.

March Proclaimed Red Cross Month: Red Cross Recognizes Every Day Heroes

President Barack Obama has proclaimed March as Red Cross Month across the country, a tradition upheld by each of our nation’s leaders since President Franklin D. Roosevelt first recognized Red Cross Month in 1943.

“For more than 130 years, the devoted women and men of the American Red Cross have responded to challenges at home and abroad with compassion and generosity. In times of conflict and great tragedy, they deliver humanitarian relief, save lives, and offer hope for a brighter tomorrow,” the proclamation reads. “Their service has meant so much to so many, and it reflects a fundamental American truth: we look out for one another and we do not leave anyone behind. This month, we renew our sense of common purpose and honor all those whose sacrifices have made our society more prepared, resilient, and united.” Read the entire proclamation here.

The Red Cross has a long-standing relationship with the White House dating back to 1913 and President Woodrow Wilson. In 1906 a largely ceremonial office of president was added to the Red Cross leadership. In 1913, President Wilson agreed to serve in this role. This began a tradition that continues today whereby the president of the United States serves as honorary chairman of the American Red Cross. The Red Cross is not a government agency and does not receive a regular appropriation from Congress.

The American Red Cross responds to nearly 70,000 disasters every year. It provides 24-hour support to members of the military, veterans and their families at home and around the world; collects and distributes about 40 percent of the nation’s blood supply and trains millions of people in first aid, water safety and other life-saving skills.

During Red Cross Month, the American Red Cross is recognizing the country’s everyday heroes – heroes who reach out to help people in need. These are the people who –

  • Help disaster victims get on the road to recovery.
  • Give blood to help a hospital patient
  • Brighten the day of an injured service member who is in a hospital far from home.
  • Take one of our lifesaving classes and step forward to assist someone having a heart attack or to save a drowning child.

Red Cross Month is a great time to become part of the Red Cross. You can work on a preparedness plan with members of your household so you are ready for emergencies. You can become a Red Cross volunteer. Or you can give blood or a financial donation.