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Woman diagnosed with Gilbert's syndrome after 20 years

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Key Points
  • Aimee Wellington struggled with undiagnosed symptoms for nearly 20 years before being diagnosed with Gilbert's syndrome.
  • Gilbert's syndrome is a genetic liver condition affecting about 5% of the population with symptoms like jaundice, brain fog, and bloating.
  • There is no treatment for Gilbert's syndrome, but lifestyle adjustments can help manage symptoms.

Aimee Wellington battled almost continuous exhaustion and often felt generally unwell and dizzy around her period for nearly two decades, according to multiple reports. Doctors continually assured her there was nothing wrong with her symptoms, and she was told by a doctor that she was an emotional young woman and that her symptoms were all in her head. She also experienced brain fog and stomach bloating that made her look eight months pregnant for a week or more, and her doctor ran blood tests for vitamin deficiencies and gut conditions, but they all came back clear, according to major media.

After switching GPs, Aimee Wellington was diagnosed with Gilbert's syndrome, multiple reports indicate. Gilbert's syndrome is a genetic liver condition caused by a mutation in the UGT1A1 gene, which interferes with how the body processes bilirubin, according to multiple reports. The condition affects around 5% of the population and can cause jaundice, increased sensitivity to alcohol, worse hangovers, brain fog, low energy, and bloating, multiple reports indicate.

I was told it was probably hormones or that I was borderline anaemic.

Aimee Wellington, Marketing officer and patient

Gilbert's syndrome can increase the risk of gallstones, according to major media, and there is no treatment for it, according to major media. Aimee Wellington manages her symptoms by adjusting her lifestyle, including booking time off work during flare-ups, according to major media. The specific blood tests that led to her diagnosis and how long it took after switching GPs remain unknown, as do the exact lifestyle adjustments she uses and how common misdiagnosis is for people with Gilbert's syndrome.

I'd cope at a low level, then the symptoms would build again, so I'd go back to the GP, only to be told nothing was wrong.

Aimee Wellington, Marketing officer and patient

He suggested I was an emotional young woman and that it was all in my head. I went home and cried. I genuinely questioned myself, asking 'What if he was right?'

Aimee Wellington, Marketing officer and patient

I can go from being extremely active to barely able to get off the sofa for days at a time. I go to the gym six days a week and I love running – but during a flare-up, all of that goes out the window.

Aimee Wellington, Marketing officer and patient

When I feel my symptoms creeping in, I sometimes book time off work to accommodate how well I know I'm going to feel after a stressful or high-energy event.

Aimee Wellington, Marketing officer and patient
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Woman diagnosed with Gilbert's syndrome after 20 years | Reed News