Chermaine (39) is conducting groundbreaking research into her own illness: 'I am doing a PhD on the illness that would kill me'

A pulmonary artery that builds up too much pressure, causing the heart to race. It sounds like a tense scene from a hospital series, but for Chermaine Kwant (39), it is reality. She was diagnosed with Pulmonary Arterial Hypertension (PAH) at the age of 25.

The rare disease nearly cost her her life, but it also inspired her to pursue scientific research. She has since earned her doctorate in nutrition and quality of life in PAH patients, the first in the world to do so.

PAH stands for Pulmonary Arterial Hypertension, a rare, progressive condition in which the blood pressure in the pulmonary arteries becomes dangerously high. This forces the heart to work extremely hard to pump blood to the lungs. This ultimately leads to overload of the right side of the heart, heart failure, and premature death. Symptoms are vague but serious: extreme fatigue, oxygen deficiency, fainting, and heart problems .

"It's like a ticking time bomb in your body," says Chermaine. "Because the condition is so rare—only about 400 people in the Netherlands have PAH—the diagnosis is often delayed." Young women, in particular, face delays: "Some see as many as ten doctors before they know what's wrong. My symptoms were also dismissed as poor fitness, but of course, training doesn't help in that case."

Chermaine received her diagnosis on Christmas Eve 2011, when she was 25. "I thought I had pneumonia, but I was short of breath for months. Finally, I collapsed and ended up in the emergency room with a stroke. They initially thought I was drunk. Luckily, they didn't dismiss me and investigated further."

The diagnosis came after a few days: advanced PAH, likely caused by a congenital heart defect. "My pulmonary artery pressure was 200, while 11 is normal. I was told I had a year to live. But I immediately thought: that's not going to happen to me."

Because medication ultimately proved insufficient, a double lung transplant in 2016 was the only option. "I spent those five years relying on my diet. I was already a dietitian at the time, and I immediately started experimenting. I noticed: the more pure my diet, the more energy I had." Diuretic foods like celery and beetroot juice, and anti-inflammatory fatty acids helped support her body.

That lifestyle paid off. Chermaine: "My doctor, Anton Vonk Noordegraaf, a pulmonologist and head of the pulmonary diseases department at Amsterdam UMC, was even surprised. He said that, looking at my values, he would expect me to be in bed all day. But I was still working, and by refining my diet and lifestyle, my quality of life improved. I'm certain that this made me feel better than I should have felt if the numbers were telling the story."

That not only gave me strength, but also direction. "After my double lung transplant, I started talking to my former attending physician, and we clicked. He said: you can do a PhD with me on nutrition in PAH." And so began Chermaine's research into nutrition and quality of life in patients with PAH.

Chermaine's research is the first in the world to examine nutrition and quality of life in patients with PAH. And that's necessary, she emphasizes. "In the past, it was either a transplant or death. Now people live longer because medication is available, but how do you feel then? How can you truly live with your disease instead of just surviving?"

The results surprised her: even patients already receiving optimal medication saw improvements in their quality of life when they made lifestyle changes. "They weren't given a list of what they could and couldn't eat, but rather small masterclasses on various aspects of nutrition and lifestyle," Chermaine explains. The patients were free to decide what to change in these areas. "Instead of a strict diet list, they were given the freedom to choose what they wanted to address. That's precisely what worked. People regained control over their bodies."

And those results are still lasting: a year after the study, participants still scored equally high, if not higher, on quality of life. This is quite remarkable for a progressive condition.

Chermaine argues that current dietary guidelines for heart failure aren't always appropriate for PAH patients. "They're routinely restricted by salt and fluid intake, but I saw patients trying so hard that their salt intake became dangerously low." She also noticed that sugar is often overlooked in the recommendations: "Eating a lot of sugar makes people thirstier, so they drink more, which puts extra strain on the heart."

Her message to doctors: "Stop thinking in black and white about nutrition. It's about the bigger picture. Give patients the opportunity to contribute to their own health."

She also has an important message for people with a chronic or terminal illness. "I truly believe you can always get better. Getting better is different from being cured. Getting better means feeling better, being able to enjoy life to the fullest. And you can do so much about that yourself."

She also learned a lot about herself. "This research brought up a lot of emotions. On the one hand, it wasn't until the research that I realized how ill I had been. Now I know: anything is possible. My health comes first; I really had to learn that. But only because of that can I be there for others. My health is my freedom."

Nine years after her transplant, Chermaine feels strong. "People die an average of eleven years after a lung transplant due to rejection or complications, but I really don't feel like I only have two years left to live. I'm doing far too well for that. And I still have far too much to do; I'm far from finished."

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