The Marfan Blog

Top 10 Benefits of Remote Jobs for those with a Chronic Condition

Jun 2, 2020 by Dominga Noe

When I came to work for the Foundation in 2016, I was the first full-time employee with Marfan Syndrome. Originally, I worked mostly in the office, then part-time at home, and now I am fully remote as I moved to Kansas City, MO back in April. My transition coincided with the work-from-home movement that was made necessary by COVID-19. Like the Foundation, in a time of social distancing, more and more businesses are learning the value of remote jobs for their employees. While many people thrive working in the office, I have experienced first-hand how working from home has so many benefits, especially if you have a chronic condition. I believe that for those of us with chronic conditions, remote work is so much more than just a job perk. It’s a professional lifeline. How so?  Here are my ten benefits to working remote with a chronic condition:

Topics: Quality of Life, Tips, self care, Work from Home, wellness

Trendsetting Volunteers Encourage Others to #DanceForVictory

Apr 23, 2020 by The Marfan Foundation

Have you seen this?

Fierce Compassion: Becca Weust and the Stories She Tells

Apr 6, 2020 by Beth Kephart

A few years ago, while writing stories for a healthcare company, I found myself in conversation with Becca Weust, a young woman who had been diagnosed with Marfan syndrome as a child. Becca had faced many complications—heart surgery and brutalizing headaches, a collapsing sternum and deepest exhaustion—and she described them to me, for that was the purpose of my call. But Becca was so intelligent, funny, interesting, and warm, that I did not wish for our conversation to end.

Topics: Marfan Community, Children and Marfan

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