A woman has shared her remarkable story of survival and resilience after a rare disease caused her height to shrink by nearly 30cm, urging others to “never give up” in the face of adversity.
Caroline King, 63, from Wiltshire, UK, initially experienced what she thought were minor irritations: sore eyes and “blurry” vision. She could not have imagined that these seemingly innocuous symptoms were the critical early warning signs of a life-threatening liver disease.
Today, Caroline is bravely recounting her journey living with granulomatous hepatitis to raise public awareness about this rare condition and the broader challenges of living with a rare disease.
“When I think about it, I still find it hard to believe what has happened and that I am still here,” she reflects, acknowledging the profound impact her illness had on her life.
Prior to her essential liver transplant, Caroline’s symptoms became debilitating, forcing her into a wheelchair due to extreme fatigue and profound disorientation, underscoring the severity of her condition.
‘One case in 10 years’
Caroline King’s ordeal began in 2018. While watching television at home, her vision suddenly turned “blurry,” a strange and unsettling sensation she vividly remembers.
“It was so strange,” she recalls of that pivotal moment.
Initially, an ophthalmologist diagnosed her with eye inflammation, a seemingly straightforward explanation at the time.
However, by 2019, with her eyes and skin turning yellow, a subsequent liver biopsy uncovered the true cause: granulomatous hepatitis. This condition proved to be so exceptionally rare that doctors admitted they had only encountered “one case in 10 years.”
Caroline then faced a daunting six-month wait for a life-saving liver transplant.
During this critical period, her health further deteriorated. Severe osteoporosis developed in her spine as a side effect of medication, causing her height to tragically shrink from 163cm (5ft 4in) to a mere 137cm (4ft 6in) – a staggering loss of 26cm.
Six years on, Caroline’s eye and liver functions are stable, and her height has partially recovered, now measuring 152cm (5ft). Her incredible resilience shines through her message to the BBC, where she implored everyone to “never give up.”
“The human body is amazing,” she added, emphasizing its capacity for healing and adaptation.
According to the British Liver Trust, thousands of individuals in the UK are living with rare liver diseases. Many of these patients face years awaiting a diagnosis due to a pervasive lack of awareness and limited research into these specific conditions.
Pamela Healy, Chief Executive of the British Liver Trust, highlighted that while these diseases “may be rarer,” their impact is undeniably “life-changing,” affecting every aspect of a patient’s existence.
“Too often, a lack of awareness leads to late diagnosis and unequal access to specialist services,” she stated, emphasizing the critical need for systemic improvements.
Healy passionately advocates for a better future: “We need better understanding, earlier diagnosis, and sustained research investment so that no one living with a rare disease is left behind.”
Rare Disease Day is observed annually on the last day of February, serving as a vital global initiative to increase awareness for the 300 million people worldwide who live with a rare disease.
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