Connective Issues Spring 2022

PURSUING A CAREER WHILE LIVING WITH MARFAN

Navigating college and a budding career can be an uncertain and scary undertaking for most young adults. For those with Marfan syndrome and related conditions, such feelings and concerns can be exacerbated. For one member of the Marfan community, Allegra Delgardo, these challenges have not stood in the way of her aspirations to become a nurse. Choosing a Career Deciding how to best choose a career while living with Marfan syndrome is di ff erent for each person. Allegra o ff ered advice for those with Marfan who want to start a career but may be apprehensive or uncertain. “Take the time you need, and get as far as you can,” she said. “If you need to stop, that’s okay, but don’t be scared to start because you don’t know what you are missing out on. With nursing and many health professions, it can be hard on your body and mind, but you can do so many di ff erent things. I say go for it!” Allegra knows from personal experience that people

p Allegra with her new fi ancé, Travis Rourk.

works for 12 hours, and she can be required to work multiple shifts, but she is fi guring out ways to make the workplace better for her. At 6’3” with hip, knee, and lower back issues, Allegra has needed to make adjustments at work. She recom

with Marfan can feel fi ne one day, and then their bodies can turn on them the next, creating a frightening experience. It can be a risk to invest time, money, and mental energy into a career and then face the possibility of not being able to do it. But on the other hand, she advises not leaving a goal unful fi lled because you have Marfan syndrome. “If you know that is what you want to do with your life with the time you have

mends taking charge and asking for accom modations. For example, she requested a weight restriction for lifting and carrying, which the hospital accommodated. She also has made other adjustments on her own. “I have a long torso, so I can lower my chair and raise my monitor. The little changes make a world of di ff erence,” she said. “I also asked a co-worker to remind me to raise the bed when doing patient care. It saves me every day, just getting that nudge from other

“I owe it to myself to explore my passions...Don't let fear hold you back from anything in life.”

here, no matter how long that is, do it, “she encouraged. “I owe it to myself to explore my passions. And yes, it hurts. It’s hard on my body, but I can heal, and if I need to make adjustments, I will. Don’t let fear hold you back from anything in life.” One regret Allegra had was shaming herself in nursing school for not being able to do everything others were doing. While fellow students were fi lling their resumes with internships, externships, volunteering, committees, nursing teams, etc., Allegra could not physically or mentally add these to her schedule. She would question if she was doing enough by not taking advantage of all the opportunities. “Now in my career, it does not matter because I’ve learned it all on the job,” she says. “If you can do those things, great, but don’t put yourself down. I wish

people to help me remember.” Allegra isn’t worried about her career in the future. Knowing there are many options with a nursing degree, she can modify her career path if needed. For now, she is focused on completing her nursing residency, taking care of her body and mind, and looking forward to the Allegra enjoys learning about her patients, talking with them, and hearing their stories. Living with Marfan syndrome, she has an instant connection and can empathize with her patients on a personal level. With a mostly invisible illness, her patients are surprised to learn of her chronic condition. “When they say they have so much pain and that I don’t know what they are going through, I can look them in the eyes and say ‘Yes I do,’” Allegra explains. “If they want to know more, I will tell them about my open heart surgery and the e ff ects Marfan has on my body. They fi nd strength in my story. I will never stop talking about Marfan syndrome. It’s so worth it to me.” opportunities she can create for herself. Unique Connection with Patients

someone would have told me that.” Make the Career Work for You

Allegra admits being nervous to see how her body would react to the demands of being on her feet and performing for long periods of time. Most days she

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Spring 2022