Thriving with Marfan Syndrome

Have you ever taken a moment to appreciate just how incredible it is to navigate life with a chronic condition while juggling everything else life throws at you? If not, you should. You're doing something remarkable every single day.

I’m Sarah. I’m 35 years young and living proof that Marfan syndrome doesn’t have to define your entire life. I work full-time as a Civil Servant in Corporate Communications, and I live in Swansea with my long-term partner and our 2 year old cat, Winnie. My spare time is filled with things I love: catching up with friends, losing myself in a good book, writing, exploring new places, dopamine dressing (think bold, happy outfits!), and enjoying musical theatre.

My journey hasn’t been without challenges. I’ve had four major aortic surgeries, suffered a stroke, and spent my 27th birthday in an induced coma. But I’ve also achieved incredible things: earning a bachelor’s degree, dancing at Glastonbury, and buying a home with my partner.

I inherited Marfan Syndrome from my father and was diagnosed at birth. Like many of you, my life has involved a constant rhythm of medication, hospital appointments, surgeries, and managing symptoms. But here’s the thing: Marfan Syndrome is just one part of who I am. My life is also full of joy, growth, and unforgettable moments.

As Marfan patients, we’re also human beings with dreams, responsibilities, and passions just like everyone else. Living with a chronic condition adds an extra layer of complexity to our lives, one that others may never fully understand. Yet, we continue to thrive, adapt, and build meaningful, fulfilling lives.

Navigating Work and Health: Finding Balance

Since graduating from university, I’ve been working full-time, taking three extended periods of sick leave for surgeries, each lasting about six months. Some days are harder than others. Pain or fatigue might force me to slow down or wrap up my day early. I’ve been fortunate to have an understanding employer, but I’ve learned that success in the workplace with a chronic condition comes down to two key things: honest communication and self-awareness.

Understanding your limits and advocating for the support you need is crucial. Whether it’s consulting with your GP, seeking advice from Occupational Health, or simply being upfront with your manager, clear communication makes a world of difference.

Embrace Your Strength

Living with Marfan Syndrome isn’t easy, but it doesn’t have to define your life or your happiness. Each of us has unique experiences and challenges, but we also have incredible resilience and strength. Celebrate your achievements, no matter how big or small. Seek out joy and connection in your daily life.

You’re not just living with a chronic condition—you’re thriving in spite of it. And that’s something truly extraordinary.