The Marfan Blog

Pain and Perseverance

Mar 4, 2020 by Christy Nath

When you're living with a condition like Marfan syndrome, it's easy to fall into the thinking that pain is just something you have to live with. 

On top of everything that comes with having Marfan syndrome, navigating through additional medical issues can seem overwhelming at times. It’s easy to give up and accept that nothing will get better and that the pain is just part of living with Marfan syndrome. I was there myself recently, after struggling with ongoing stomach problems - unrelated to Marfan - for two long years.

Reflecting on Awareness

Feb 19, 2020 by Allison Pullins

Topics: Volunteer, Marfan Awareness, Children and Marfan

Jimmy's Magic Turtle

Feb 6, 2020 by Cynthia Lee De Boer

Topics: Marfan Awareness, Marfan Community, Children and Marfan, Neonatal Marfan

#VictoryToday

Dec 2, 2019 by The Marfan Foundation

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.

Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday

Working with Your School Nurse

Aug 24, 2019 by The Marfan Foundation

newsschoolyear

For parents of a child with a connective tissue condition, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child have to “break in” a new teacher and sometimes a new school and a new school nurse. You want to ensure that your child will be safe at school and empowered to achieve academically – and that the school can handle any potential emergency medical situation.

Topics: Medical Management, Education, school