The Marfan Blog

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

The Case of the Tell-Tale Toes

Apr 7, 2021 by Roanne Weisman

Topics: Quality of Life, doctors, Tips, Healthcare Management, Education, Feet

Working from Home and Your Mental Health: The Positives

Mar 25, 2021 by Destiny Lomonte

In 2020, the world saw that there are many benefits to working from home, especially for people who live with a chronic condition, as discussed by Dominga Noe in June of last year. As we wrap up a year spent in quarantine, Destiny Lomonte, takes a look at how the move to work from home has been beneficial to the mental health of many in our community.

It’s no surprise that work and mental health are intertwined. We all know how work can cause stress and exacerbate mental health conditions, but what we have all learned this year is how it can positively affect one’s mental well-being.

Topics: Quality of Life, self care, Education, wellness, Mental Health

Volunteer Drives Successful First-Year Proclamation Project

Mar 16, 2021 by The Marfan Foundation

Amy Kipnis with her family at Hill Day in 2019.

Topics: Volunteer, Marfan Awareness, Hill Day, Education