The Marfan Blog

Your Questions Answered:  Medical Geneticist and Genetic Testing

Nov 23, 2020 by Dr. Irman Forghani

If you have a connective tissue condition or are seeking an evaluation for one, you know that you need to see a cardiologist to evaluate your heart, an orthopedist to evaluate your bones and joints, and an ophthalmologist to evaluate your eyes. But what is the role of the medical geneticist?

Topics: Diagnosis, Healthcare Management, Medical Management, Genetics, Q&A

Three Things I’ve Learned In 25 Years Since Diagnosis

Sep 2, 2020 by Megan Price

Caption: Megan, far left, with her family.

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 a lot about navigating life with Marfan Syndrome. These are the top three things I want to share with someone newly diagnosed:

Topics: Marfan Awareness, Diagnosis, Quality of Life

FINDING MARFAN: A BREAKTHROUGH IN MENTAL HEALTH

Feb 15, 2019 by Ken M

This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think about it, for a handful of years it’s all about developing, playing, and watching TV. Then, you go to school. 

Topics: Marfan Awareness, Diagnosis, Physical Activity

5 Tips for Educating your Doctor about Marfan Syndrome

Feb 6, 2018 by Wendy Molaska

female doctor.jpg

Medicine is constantly changing, and often faster than doctors can keep up. Your doctor has to periodically update her knowledge, but she also has to see hundreds of patients a week, which means she could be a little behind the times regarding new advances or the details of all illnesses and syndromes.

Topics: Diagnosis, doctors, Tips

My Marfan Story: Home for Christmas

Dec 20, 2017 by Auburn Ponder Anderson

Auburn's late husband, Ted, with their son, Kelly.

Topics: Marfan Community, Diagnosis, Living Successfully, Quality of Life