At SintLucas in Eindhoven, Roan Rossel (17) does not stand out among his classmates. Yet he carries something with him that almost no one sees: aHUS, a rare condition in which his immune system can suddenly attack the small blood vessels in his body. “Most days I don’t notice it much, but if I get sick it can suddenly become very dangerous,” he explains.
“I’m no different from anyone else,” Roan says calmly. He gets up in the morning, goes to school and works on projects that he enjoys. During breaks he hangs out with his friends and after school he goes into town. Many of his classmates do not know about his illness until it is mentioned. “No one usually notices me. I don’t have to deal with hospital matters every day, fortunately,” he says. “As long as I feel good, I just live my life.”
What is aHUS?
aHUS is a rare disease in which the immune system sometimes reacts too strongly to attackers such as bacteria and viruses. Instead of just attacking bad invaders, such as viruses or bacteria, aHUS attacks its own small blood vessels. This leads to the formation of small clots in these vessels, which reduces blood flow and can damage organs, especially the kidneys.
People who are susceptible to aHUS often only notice that something is wrong when they become ill: their blood values change quickly, they get bruises or suddenly feel very tired. With good checks and prompt treatment, doctors can prevent many problems, but the disease remains unpredictable.
Far-reaching experience
Roan’s first experience with the disease was profound. He was eleven and had a serious throat infection when the GP saw something remarkable during a consultation. “I had a yellow glow in my face. Something was wrong,” he remembers. A blood test followed, and that same evening the hospital called that he had to come immediately: his blood values were alarming. No one knew yet what exactly was going on.
Roan was immediately placed in quarantine in the hospital in Venlo that night. Because doctors suspected that something was wrong with his kidneys, he was transferred to the Radboud university medical center in Nijmegen, where specialists eventually discovered that he had aHUS (see box). A disease that is so rare that only one in two million people will be affected by it. “I was lucky that my pediatrician happened to see a specialist who knew the disease. If she hadn’t been there, they might have known too late and things could have turned out very differently.”
Always alert
Since that first time, Roan has had three seizures in six years. In between those moments he leads a fairly normal life, although he remains cautious. Fear increases, especially during flu and virus seasons. Because no matter how common a cold is for others, for Roan a simple infection can cause his immune system to overshoot. “When I get sick, my platelets plummet. I get bruises, spot bleeding and my urine turns almost black. That’s still scary, even for doctors.”
The impact only really became tangible during the corona pandemic. While many peers returned to school after a while or outside appointments, Roan sat at home. “It was too dangerous for me. I hardly saw any friends during that period.”
He now dares more. He eats out, goes to school and sees his friends again. “You cannot let an illness determine your life,” he says, although every cold remains a reason to be alert. At home, his parents measure his blood pressure and check his urine. “If something is wrong, we call the hospital. They often say: don’t take any risks, just come.”
Unconditional support
The support of those around him means a lot. Roan’s mother always comes along to appointments and his friends are committed to a campaign to raise money for medicines and research into aHUS. The plan: walk eighty kilometers. “That they are tackling something so big, especially for my illness. I think that is really nice.”
Despite the fact that the disease can lead to a fatal outcome, Roan doesn’t think all day about what could go wrong. Yes, there are moments of uncertainty. But he is not afraid of dying. “I have confidence in the hospital. They know what they are doing.”
What he does hope is that the disease will become better known. “I always have to explain it. Even doctors often have to look at my file. If more people know what aHUS is, it will make such a difference. And the more research there is, the better the care.”