Marfan Syndrome Awareness Month is a relatively new addition to the calendar. It began with the #IKNOWMARFAN campaign, run by the Marfan Foundation in 2017. 

The Marfan Foundation is an organization dedicated to providing education and patient support, along with funding research on Marfan syndrome and related disorders. 

The #IKNOWMARFAN campaign consisted of both social media and grassroots events. Local events were hosted by Marfan syndrome community groups throughout the U.S. with the goal of promoting awareness, fostering connections and raising funds. The social media campaign allowed those with Marfan syndrome to connect with online communities. 

Marfan syndrome is a genetic condition that affects connective tissue, which holds the body’s cells, organs and tissue together. 

Marfan Syndrome affects many parts of the body, including the bones and joints; heart and blood vessels; eyes and head; skin; and lungs. 

Marfan syndrome is caused by a gene mutation, which results in an increase in a protein called transforming growth factor beta. This causes the problems in connective tissues that characterize Marfan syndrome. 

According to the Marfan Foundation, some of the common signs of Marfan syndrome are relatively easy to spot. These include long arms and legs, a curved spine, flexible joints and a chest that sinks in or sticks out. 

The Marfan Foundation emphasizes the need for early diagnosis when possible, as some of the symptoms of Marfan syndrome can be life-threatening. This includes aortic enlargement, which can lead to the aorta rupturing later on. 

Managing Marfan syndrome requires routine doctor appointments to monitor the condition, medications and limitations on physical activity. 

About one in 5,000 people have Marfan syndrome. The Marfan Foundation estimates that about half of those with Marfan syndrome are not aware that they have it, which is why the foundation seeks to raise awareness of the condition. 

The main ways to celebrate or participate in Marfan Syndrome Awareness Month are to raise awareness. The Marfan Foundation provides templates and graphics for people to make social media posts. 

The foundation hosts a “Walk for Victory,” which is a fund-raising event that raised almost $2 million last year. There are walks planned all across the country, with dates ranging from February to June. Some of these walks have already hit their goal. 

Those who want to walk for victory can register on the Marfan Foundation’s website. 

The foundation has also been advocating for a state proclamation for Marfan Awareness Month. 

Feb. 15 is Marfan Awareness Day of Giving. This can be celebrated by donating to the Marfan Foundation, taking place in local events and raising awareness for Marfan syndrome on social media. 

Share