Sky News Diplomatic Editor Reveals Battle with Ultra-Rare Disease
Isle of Skye, Scotland – Sky News Diplomatic Editor Deborah Haynes is recovering after a harrowing two-week hospital stay, including a week in intensive care, battling atypical haemolytic uraemic syndrome (aHUS), an ultra-rare disease affecting between 2.7 and 5.5 people per million globally. Haynes, known for her reporting from war zones, found herself facing a life-threatening crisis in a remote corner of the British Isles, triggered by an unknown cause. She has now been discharged and reports she is “on the mend.”
The illness struck unexpectedly, leading to a period of intense medical intervention and vivid, disorienting dreams. Haynes recounted an experience while heavily medicated where she dreamt of being under missile fire – a reflection of her journalistic background – and instinctively attempted to leave her hospital bed, requiring intervention from a nurse. The ordeal underscores the unpredictable and severe nature of aHUS, a condition that can impact multiple organs and requires rapid diagnosis and treatment.
aHUS is a disease of the immune system,specifically the complement system,causing it to mistakenly attack the bodyS own cells,leading to perilous blood clots,notably in the kidneys. While typically linked to a genetic fault, attacks can be triggered by infection, pregnancy, or food poisoning. Symptoms range from fatigue and confusion to blurred vision, shortness of breath, and severe gastrointestinal distress.
Haynes will appear on Sky News from 8.30am alongside Professor marie Scully to discuss aHUS Awareness Day and raise awareness of this little-understood condition.
What is aHUS?
Atypical haemolytic uraemic syndrome is an ultra-rare disease that affects between 2.7 and 5.5 people per million population worldwide. It has an incidence rate of about 0.4 people per million a year and can occur at any age.
The disease affects part of the immune system called the complement system. It starts to destroy the body’s own cells, especially those that line blood vessels.This leads to clots forming within small vessels. The kidney is most commonly impacted, but all organs can be harmed.
AHUS is typically linked to a genetic fault in the complement system or a group of proteins meant to regulate it.
The trigger for an attack can be infection,pregnancy or food poisoning.
Symptoms can include feeling unwell or tired,becoming confused,blurred vision,shortness of breath,high blood pressure,nausea and vomiting,diarrhoea and abdominal pain.
