February is Marfan Syndrome Awareness Month: Spreading Rare Disease Awareness

February is recognized as Marfan Syndrome Awareness Month, which is an event intended to help spread awareness about Marfan syndrome among the general public and in the medical field. This year, the Marfan Foundation is focusing on tapping into the power of social media during the month of February to help spread the world about this uncommon syndrome. Keep reading if you’re ready to play a part in advocating for this rare community.

About Marfan Syndrome

Marfan syndrome is a genetic disorder which affects connective tissue. The severity of symptoms can vary from person to person. This syndrome is caused by mutations affecting the FBN1 gene. People with Marfan syndrome tend to be tall and thin, with distinctively long limbs, hands, feet, and digits. They also often have exceptionally flexible joints, and scoliosis is also common. Abnormalities of the aorta and heart may also be present, and these are the most dangerous characteristics of the syndrome. Patients are at risk of aortic aneurysm, in which this artery expands to over 1.5 times its normal diameter. If it ruptures, it can be a medical emergency that is often fatal. Management may involve medication and surgery to prevent the possibility of heart problems or aortic aneurysm and rupture. Keeping heart rate and blood pressure low is beneficial, and patients are discouraged from high intensity physical activity. To learn more about Marfan syndrome, click here.

Tap Into Social Media

A great way to get plugged into Marfan Syndrome Awareness Month this year is to start following the Marfan Foundation on its social media platforms, including Facebook, Twitter, Instagram, and YouTube. The organization will be posting valuable information about Marfan throughout the month. In addition to sharing these posts, the Foundation has also provided a collection of images for social media so that you can create your own posts. Click here to view and download.

When you are making your posts on social media, make sure to include the #MarfanAwareness hashtag along with a link to marfan.org. You can also share links to the Marfan Foundation’s YouTube channel, which has several videos that can help inform viewers on the basic facts about the genetic disorder. Click here to view the channel.

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