Living withโค Awareness: roan’s Journey with aHUS
Roan lives with a philosophy of embracing life provided that he feelsโข well, a viewpoint shaped by his experience with a rare and unpredictable disease called atypical โHemolytic โคUremic Syndrome (aHUS). aHUS occurs when the immune system overreacts,mistakenly attacking the body’s own small blood vessels instead of solely โtargeting invaders like bacteria and viruses. This leads to the formation of clots, restrictingโค blood flow and potentially damaging organs, notably the โขkidneys.
roan first encounteredโ aHUS at the age ofโ eleven,following a throat infection. His family doctor noticed a concerning yellow tinge to โคhis skin,promptingโ 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 โขmedical centerโ in Nijmegen, where โhe received a diagnosis of aHUSโค – a condition affecting approximately one in two million people.Roan credits his โpediatrician’s familiarity withโข a specialist knowledgeable about aHUS as crucial to his timely diagnosis and care.
Since that initial episode, Roan has โexperienced three aHUS seizures over six โคyears. Between these events, he strives โขto live a normal life, but remains vigilant, particularly during flu and virus seasons.Even a common cold โขcan trigger an overreaction from his immuneโ system,โฃ causing aโค rapid dropโ in platelets, leading to โbruising, spot bleeding, and โdark-colored urine – symptomsโ that remain frightening, even for his medical team.
The COVID-19 pandemic highlighted the challenges of living with โคaHUS. Whileโค many โof his peers resumed normal activities, Roan was โforced to isolate at homeโ due to the increasedโข risk of infection. He has since become more comfortable venturing out, now eating out, attending school, and seeing friends. “You cannot let โan illnessโฃ determine your life,” he asserts, though he โacknowledges 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 โhis family and friends. His mother consistently โaccompanies him โฃto medical appointments, andโค his friends are actively involved in โขa fundraisingโ campaignโ – โan eighty-kilometer walk – to support research and access toโฃ medication for aHUS. He is deeply touched by โฃtheir dedication.
despite the potential for a fatal outcome, Roan doesn’t dwell โon the possibility of dying.โค He expresses confidence in his medical team and โtheir expertise. His primary hope is for increased awareness โof 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.
