You’d be excused if many (or even most) of you have never heard of this rare disease – which is why it’s important to observe rare disease awareness months.

Marfan syndrome is an inherited disorder that affects the connective tissues in the body – which are the fibers that support and anchor the organs and other structures in the body; these most commonly include the heart, eyes, blood vessels, and skeleton.

Those with Marfan syndrome are born with it, but features of the disorder are not always present immediately. Some have a lot of its common features early in life – including serious conditions like aortic enlargement. Others have fewer features when they are young and don’t develop aortic enlargement or other signs until later adulthood. Some features of Marfan syndrome, like those affecting the heart and blood vessels, bones or joints, can get worse over time.

There are disorders related to Marfan syndrome that can cause people to struggle with some of the same or similar physical problems. Some examples are Loeys-Dietz syndrome, Ehlers-Danlos syndrome, and Familial Thoracic Aortic Aneurysm and Dissection.

According to the Marfan Foundation, 200,000 people in the United States have Marfan or similar, related diseased; and experts say that half are not diagnosed and are at risk of sudden early death.

So what are some things we can do collectively?

1. Get personally involved

Whether it’s attending or hosting an event, or donating some money – direct involvement is often the best way to be a part of the solution. The Marfan Foundation has plenty of opportunities to do just that!

2. Make your government work for you

One of the best avenues to take is appealing directly to those who make policy. Whether it’s addressing the US Congress or your state or local representatives, taking action to make your voice heard is an important part of our democracy and society. We all have a voice – so let’s use it!

3. Blast your social media

Sometimes, just teaching ONE person about a rare disease can make a difference. It’s like a pay it forward situation – the more people know, the more people are likely to care and do something. So whether it’s sharing this article or anything else you might find about Marfan – go ahead and do it, with the hashtag #IKnowMarfan (along with these other hashtags, #IKnowLoeysDietz, #IKnowEhlersDanlos, #IKnowFAA, #IKnowSGS for related diseases).

Let’s get out there and raise some awareness!

Do you have a rare disease that you want to tell others about? Share your stories, thoughts, and hopes, with the Patient Worthy community!