When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.
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:
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:
Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He does not like the glasses. They’ve always bothered him, but now, as he gets a little older and he gets more questions about them from kids his age, he really wishes he could just wear contacts.