The Marfan Blog

Beauty Enthusiast Overcomes Obstacles

Jun 30, 2021 by The Marfan Foundation

Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx, NY,  was diagnosed with Marfan syndrome at the age of 4 when her mother noticed she was looking down at her hands a lot. At an eye doctor appointment, they learned that the connective tissue in her eye was loose, leading her to additional medical evaluations. As a result, the diagnosis of Marfan syndrome was confirmed. Adariel is the first in her family to have the condition. 

Topics: Marfan Awareness, Marfan Community, Diagnosis, Quality of Life, Medical Management, Surgery

Nick’s Journey in Honor of Connor’s Big Heart

May 13, 2021 by Bridget Porter (Metz)

Nick (front) and Connor in July 2020 

On the morning of December 3, 2020, Nick Metz, a 16-year-old in California, was schooling from home like most kids in the US when I pulled him to rush to the hospital. His 13-year-old brother, Connor, had been taken to the ER earlier in the morning to address what we thought was merely a back ache.

Topics: Marfan Awareness, Diagnosis, Loeys Dietz, Children and Marfan

Losing My Sight Saved My Life

May 3, 2021 by The Marfan Foundation

Jasmine’s family (l-r) Mom Joanne Duffey, dad Alvin Duffey, Jasmine, sister Jawanda Duffey, and brother Jarvis Williams.

At 6’7” tall, Jasmine Duffey was one of the nation’s top basketball prospects in high school. She headed to Middle Tennessee State to pursue her dreams of college basketball, with hopes of going even further in the sport she loved. It was not to be.

Topics: Marfan Awareness, Diagnosis, Living Successfully, Quality of Life, wellness

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