Living Well with FOP: A Conversation with Julie Elmquist Christensen

By Isabel Edwards

For many people living with rare diseases, living well is a deeply personal concept, one that goes beyond access to medical treatments. It includes mental health, community, education, and the ability to shape a positive, individual identity.

The Living Well Movement, led by Metabolic Support UK, aims to empower individuals in the rare disease community to thrive in all aspects of life, not just within the medical world.

‘Living well’ is such an individual experience within a broader movement.  We spoke with Julie Elmquist Christensen, a recent nutrition graduate and a member of the FOP community, to hear her perspective of what living well means to her.

Self definition of Living Well

Julie studied nutrition at VIA University College in Aarhus, Denmark.  During her time of study she came to understand wellness in ways that reached far beyond societal expectations.

“During my study time,” she shared, “it became more important to me to have good health rather than live up to university expectations.  As a student, I first wanted to do everything perfectly, but then I discovered that a good grade wasn’t the most important thing.”

What mattered more she, realised, was being able to find a balance to make her feel well outside of societal expectations – physically, mentally, and emotionally.

Learning to Ask for Help

Julie’s university years were shaped not only by the pressures of academic stress, but barriers from starting university during COVID where she was “mostly at home while my classmates were at university,”.  Julie continues, “Then, post-Covid, the next challenge was the more physical classes – I do feel like my teachers could have been more understanding.”

Yet she found ways to adapt to the challenges, “My strategy wasn’t to read all the homework, but to take lots of notes in class and make sure I got all the important stuff written down.”

Equally important was recognising when to lean on others. “Pushing yourself to the limit is not always worth it,” she told me. “It’s okay to ask for help – and to ask before it’s needed.”

A Personal Approach to Health

As a nutrition student, Julie began to look into the role of diet played into health.  She doesn’t eat much meat – a decision she made after learning about the connections between eating meat and kidney infections–and she drinks a lot of green tea, “which is suitable for fighting off bacteria.”

But her approach to nutrition is realistic rather than strict.

“I try to eat as many vegetables as possible because it helps with some of my symptoms. But sometimes, especially when I have flares and don’t feel hungry, it’s hard to get all the nutrients I need. I should probably be living much healthier than I do,” she answered. “It’s all about balance.”

And balance, in her view, includes not obsessing over perfection. “Every person is different. What works for one doesn’t work for all.”

Navigating Academic Life with a Disability

When I asked Julie how universities could be better support for students with rare conditions, her answer was simple, but powerful.

“Just listen. Ask the student what would help. You don’t need to have all the answers – just showing that you care is already a good start.”

She shared that having a mentor early on was necessary to navigating her studies. “They helped me figure out what was most important in my courses. I also learned that I couldn’t do everything, and that was okay.”

Studying would sometimes be intense. “Sometimes I had to read 12-16 readings a day to prepare,” she admitted. “That’s not always an option with someone with FOP. But I did the best I could with the energy I had.”

Wellness Is More Than Health

Perhaps one of the most striking parts of our conversation was Julie’s insight into the misconceptions about the living well movement, and about wellness.

“In general, health and well-being don’t always appear together,” she said. “You can live healthily without being in a good place in your life–or the other way around.”

Julie has a few trusted people that she is close to her within the FOP community. “I also have a great network on Instagram,” she added. “People with different diseases and perspectives – we support each other, offer advice. A good network is so important, no matter how you find it.”

Words for the Next Generation

As our conversation wound down, I asked Julie what advice she might offer to other students with chronic conditions or disabilities who want to live well on their own terms.

She didn’t hesitate.

“Ask yourself what’s really important to you. Don’t be scared to tell your teachers when something is hard – because it is hard, even without a disability. You’re the only one who knows when you’re reaching your limit.  And it’s okay if you don’t get an A in everything. You’re doing your best with the resources you have.”

Through her journey, Julie has learned that living well is not about perfection – it’s about balance, self-advocacy, and defining your own version of success.

“In the end,” she said, “just remember that everyone is different. Find your own way. Follow what makes you happy. That’s what living well really means.”