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
Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.
As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex. It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.
Topics: Marfan Community, Research, Tips, Healthcare Management, Medical Management
| “Oh, my goodness, how skinny you are.” |
Topics: Quality of Life, Tips, self care, Physical Activity, Healthcare Management
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.
