Connective Issues - Summer 2020

WHAT’S LIFE BEEN LIKE DURING QUARANTINE?

What’s it like living through a once in a lifetime pandemic with a rare connective tissue condition? We knew this would create added stress for our community, which deals with medical issues regularly. But we also know the strength and resilience that runs through our community. We were curious about what you’ve been up to. Here are some of your responses: During quarantine, my husband and I started making weekly podcasts. So far we’ve recorded 5 episodes! My husband, Jeremiah, and our 8-month-old daughter, Sophia, have Marfan syndrome. Starting a podcast has been an amazing creative outlet that’s brought us closer together. It’s incredible to sit down and have a completely uninterrupted conversation. We had wanted to start a podcast to help build a community for ourselves since we moved to Georgia from Arkansas. I don’t think we would have started it if we hadn’t been in quarantine, but through it, we’ve recently make a new friend who also has Marfan and lives in our community. In our fourth episode, we talked about Marfan syndrome and how it affects our family. We shared it in a local Marfan community group. Someone from the group reached out and we met via Zoom. This was the first person with Marfan, outside of immediate family, who Jeremiah had ever met and he learned quite a bit about himself and his condition just from that one conversation. The podcast has definitely been a life line to keep us sane. I'm so thankful that we've been able to make new friends and build our own little community through it. I'm hopeful it will continue to grow! You can find A Place for Us on Spotify, Anchor, and soon on Apple. – Alyssa Elgen, Jeremiah Wren and Sophia Wren, Georgia, Marfan

p Jeremiah and Alyssa with their podcast setup and with daughter, Sophia (below).

My name is Rhayssa and I'm 26 years old. I have a diagnosis of Marfan syndrome and I live in Brazil. I am a psychologist and I work in a call center, but I am allowed to stay at home. I have used my time to study, play the guitar, pray, exercise, be with family. It is difficult, the whole change of routine, not being able to go out, work, see friends. But I know that it is necessary to stay at home, take care of myself and take care of who is with me! I believe that everything will pass, and it will be a new chance to start again, stronger and with more hope! – Rhayssa Morais, Brazil, Marfan

So back in February when everything was starting, I joked with my coworkers, “You guys know I’ll literally be the first person in the office to get coronavirus.” On April Fool’s Day, I had to call in sick. Who was going to take this serious? My doctor said I most likely had COVID but to just stay home, take Tylenol, drink as many fluids as possible, and rest. And under no circumstances leave the house! This continued a few days with my husband taking amazing care of me until one day I could feel the heat resonating off of him. He was now sick too. Neither of us said it out loud but we were scared. All in all, it was about a 19 day illness for me. This has absolutely changed the way I look at things and people! I hope everyone is wearing their mask and following social distancing because, if we can save one life or save one family, the stress of what we went through that would be amazing! – Janet Majewski, New York, Marfan

Living with a genetic aortic condition can take away your identity and make you feel like a shadow of your former self, especially during a pandemic when you are faced with yet again a situation beyond your control, forcing your life to an immediate halt. But remember that in order to cast a shadow, the sun must be at your back and you are looking toward what lies ahead. Together we move forward. Know you are not alone. – Bridgette Howe, New York, VEDS

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Marfan.org