Living With Marfan Syndrome
Learning you or someone in your family has Marfan syndrome can deeply affect the quality of life of the individuals and families coping with it. That’s why it’s important to get an appropriate diagnosis, learn about the recommended treatments, be prepared for surgery and take special precautions for physical activity and other situations, like pregnancy.
While living with Marfan syndrome requires multiple doctor appointments, regular monitoring, and special tests, you can live a long, productive life.
A Marfan diagnosis can often be made after exams of several parts of the body by doctors experienced with connective tissue conditions. Genetic testing can also provide helpful information in some cases.
If you have Marfan syndrome, there are medications and surgeries to help you avoid the most serious complications.
Together, We are Fighting for Victory
Three Things I’ve Learned In 25 Years Since Diagnosis
I was diagnosed with Marfan syndrome at the age of ten during a visit to the Mayo Clinic on referral from my orthodontist. I’m now in my thirties and working as an attorney in Chicago. Over the last two and a half decades, I’ve learned…
Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies
Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot) because you didn’t want to bring up your diagnosis? Have you ever felt anxious about going to your cardiology appointment and thought…
Healthy Life Comes From Awareness
I was diagnosed with Marfan syndrome around the age of 12 years old, while growing up in Meridian, Mississippi. My diagnosis was brought about due to poor vision, which, it turns out was caused by dislocated lenses in both eyes. This led…