Marfan Awareness Month Translatable Resources

Helpful Phrases

It’s Marfan Awareness Month
Hello, my name is. I live with Marfan syndrome. I want you to know…(share one sentence about yourself).
Find resources at marfan.org. The site can be translated. Look for the dropdown menu at top right.
Know the signs

Know: Your Aorta & Risk

People living with Marfan syndrome are 250 times more likely to have an aortic dissection* than the general population.

*A tear in the artery that takes blood away from the heart.

Know: Genetic Testing
Do you have Marfan syndrome?

Genetic testing can be used to confirm a suspected diagnosis of Marfan syndrome. But working with a genetic counselor or medical geneticist is often necessary.

marfan.org/genetic-testing

Know: Get Answers

To get evaluated for Marfan syndrome and related conditions, you need to have your heart, eyes, and bones examined by doctors who have experience with these conditions.

Visit: marfan.org/findcare

Know: Common Features

Some people living with Marfan syndrome may be disproportionately tall with long arms and legs and an arm span greater than their height. Most people may not have every feature or may have different combinations of features. Learn more: marfan.org/knowthesigns

Know: Visible Signs

Everyone with Marfan is unique; most people will not have every feature. Traits that may indicate Marfan – especially in combination – include: curved spine, chest sinks in or sticks out, flexible joints, flat feet, and stretch marks.

Learn more: marfan.org/knowthesigns

Know: Less Visible Signs

Heart or aortic problems.

Sudden lung collapse.

Eye problems like severe nearsightedness, dislocated lenses, detached retina, early glaucoma, and early cataracts.

marfan.org/knowthesigns

Know: First-Gen Marfan

In most cases, Marfan syndrome is inherited from a parent. However, in about 25% of cases, the affected person is the first one in the family to have the condition.

Know: Eye Issues = A Sign

A dislocated lens in the eye is a hallmark of Marfan syndrome. A particular test called a slit-lamp eye exam is needed for an eye doctor to detect a dislocation.

Know: Your Best Life

Does living with Marfan syndrome cause you to struggle with self-esteem or body image? We have resources to help you live your best, most confident life. Visit marfan.org/mental-health

Know: It’s OK to Ask

Do you have medical or well-being questions about Marfan syndrome?

We can help.

Visit www.marfan.org/ask for free answers to non-emergency questions.

Know: How to Find Info

You can use our Marfan Foundation Community Companion to find information 24/7, year-round.

marfan.org/communitycompanion

*Not for emergencies

*Not a substitute for medical advice

Know: You Are Not Alone

Living with Marfan can sometimes feel isolating. Know that you are never alone.

We’re here for you.