The NPO, Japan Marfan Association, is providing a nation-wide series of study talks with parents of children with Marfan Syndrome.

Marfan is a genetic disorder inherited from a child’s parents. Sometimes it goes unnoticed in a family until symptoms become increasingly apparent.

The Japan Marfan Association is funded in Japan with the support of the Nippon Foundation. It provides factual meetings and talks with experts to help parents understand how to help a child who is affected by the disorder.

Complications of Marfan’s Syndrome (Photo: Adam, Inc.)

Marfan syndrome affects the body’s connective tissue. The primary purpose of connective tissue is to hold the body’s structure 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 have the disorder.

Abraham Lincoln reportedly had Marfan Syndrome

Marfan syndrome affects different people in different ways. Some people have only mild symptoms, while others are more severely affected. In most cases, the symptoms progress as the person ages.

The Japan Marfan Association provides talks on all these issues and how parents can be aware and seek appropriate medical help for their affected children.

These study meetings help parents to prevent complications, otherwise a child may be subject to increasing aggravations of symptoms including aortic valve problems, and even sudden death, according to the association.

With increasing age the child may also develop severe pain in joints and in the spinal vertebrae’s dura mater.

The probability of children inheriting the disorder from a parent who carries the genetic disease is about 50%, the disorder can also be caused by mutations in the gene of the child.

In Japan there are approximately25,000 reported cases of the disorder.

Study events for parents are usually limited to 15 persons at a time. Each participants receives a workbook, and sessions are held in a relaxed, informal study session format.

Further information is available from NPO Japan Association of Marfan by contacting info@marfan.jp