Having been in and out of hospital hundreds of times, Hannah Smith was used to feeling terrible. But this time, she knew things were serious.
She was 27 and could feel herself starting to struggle with the rare genetic condition that was poisoning her brain and body.
Then her hospital consultant confirmed the bad news.
Hannah choked back tears as he explained she needed an urgent liver transplant, otherwise she would die.
Hannah, who is now 30 and works ina school, says: My life was plagued by illness, but even so, I thought I was doing OK.
“Five years earlier Id asked whether a liver transplant would cure me but I was told I wasn't sick enough, so I had started to dare to think about what my future looked like, marriage and kids. Suddenly it felt as though that all might be taken away if a suitable donor couldn't be found’
Hannah, from Corby, Northants, was diagnosed with ornithine transcarbamylase deficiency OTC) in 1993, not long after she was born. Her mother had noticed she kept vomiting and was worryingly lethargic.
The disorder means the liver fails to make enzymes that remove ammonia, which builds up in dangerously high levels in the blood. Hannah was only the 40th person in Europe to receive the diagnosis.
Today, OTC is estimated to affect between one in 14,000 and one in 80,000 people.
“My parents were told Id need a lifetime of medication and monitoring, explains Hannah. Blood ammonia levels are usually less than 50 micromoles per litre.
“As a child, mine could be anything from 200 to thousands, and when it reached 1,000 Id find myself in hospital.
This story is from the February 12, 2023 edition of Sunday Express.
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This story is from the February 12, 2023 edition of Sunday Express.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
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