Living with Awareness: roan’s Journey with aHUS
Roan lives with a philosophy of embracing life provided that he feels well, a viewpoint shaped by his experience with a rare and unpredictable disease called atypical Hemolytic Uremic Syndrome (aHUS). aHUS occurs when the immune system overreacts,mistakenly attacking the body’s own small blood vessels instead of solely targeting invaders like bacteria and viruses. This leads to the formation of clots, restricting blood flow and potentially damaging organs, notably the kidneys.
roan first encountered aHUS at the age of eleven,following a throat infection. His family doctor noticed a concerning yellow tinge to his skin,prompting a blood test.That same evening, he was urgently summoned to the hospital due to alarming blood values. He was immediately quarantined and subsequently transferred to the Radboud university medical center in Nijmegen, where he received a diagnosis of aHUS – a condition affecting approximately one in two million people.Roan credits his pediatrician’s familiarity with a specialist knowledgeable about aHUS as crucial to his timely diagnosis and care.
Since that initial episode, Roan has experienced three aHUS seizures over six years. Between these events, he strives to live a normal life, but remains vigilant, particularly during flu and virus seasons.Even a common cold can trigger an overreaction from his immune system, causing a rapid drop in platelets, leading to bruising, spot bleeding, and dark-colored urine – symptoms that remain frightening, even for his medical team.
The COVID-19 pandemic highlighted the challenges of living with aHUS. While many of his peers resumed normal activities, Roan was forced to isolate at home due to the increased risk of infection. He has since become more comfortable venturing out, now eating out, attending school, and seeing friends. “You cannot let an illness determine your life,” he asserts, though he acknowledges that every cold necessitates heightened awareness. His parents regularly monitor his blood pressure and urine at home, and promptly contact the hospital if any concerns arise.
Roan benefits from strong support from his family and friends. His mother consistently accompanies him to medical appointments, and his friends are actively involved in a fundraising campaign – an eighty-kilometer walk – to support research and access to medication for aHUS. He is deeply touched by their dedication.
despite the potential for a fatal outcome, Roan doesn’t dwell on the possibility of dying. He expresses confidence in his medical team and their expertise. His primary hope is for increased awareness of aHUS. He frequently finds himself explaining the condition to others, even medical professionals who need to review his file. He believes greater understanding will improve care and encourage further research.
