'I thought I was bloated - now fatal condition is starving me to death'

Daily Mirror

5 days ago

Charlotte Kent, 25, is bedridden after a five-year-long fight with a condition that means a blockage in one of her major arteries is crushing her intestine
A young woman is "starving to death" due to a lethal vascular condition that she initially dismissed as bloating. Charlotte Kent, 25, is confined to her bed after a five-year battle with superior mesenteric artery syndrome (SMA) - a condition in which a blockage in one of her major arteries is compressing her intestine.
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The once "outgoing, active" student believed she was experiencing bloating from over-exercising - but her symptoms progressively worsened over five years, resulting in significant weight loss and an inability to retain food. Her aspirations of becoming a police officer were dashed when she developed multiple bowel obstructions, continuous vomiting and had to rely on a nasogastric (NG) tube for nutrition.
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Her mother, Leanne Bennett, 46, is currently fundraising for a life-saving operation in the US known as the Alvear procedure - where the duodenum is untwisted and repositioned. Leanne's aim is to locate a surgeon in the UK capable of performing this procedure, as it would be less risky than travelling to the US for the operation.
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Leanne says Charlotte is malnourished and fears she's "watching her slowly die" while they wait to raise the funds for the surgery.
Leanne, who provides full-time care for Charlotte in Earith, Cambridgeshire, expressed: "Charlotte is dying before my eyes - her body is just slowing down. Because SMA is so rare, doctors in the UK have little understanding about it - and she hasn't been offered the new surgery to correct it.
"The Alvear procedure is so new, it isn't yet available on the NHS. To be honest, she's been presenting with symptoms, like a distended stomach, from a fairly young age - but I always put it down to growth spurts."
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During her childhood, Charlotte was recognised for her constant energy and began gymnastics training at 13. Leanne recalls she frequently experienced episodes of "feeling sick and bloated" - though she attributed these symptoms to typical childhood bugs and ailments. Seven years on, at 20, she developed an unexplained pain on her right side.
"In February 2020, doctors whipped her appendix out in the hope it would stop her pain," Leanne said. "But it only got worse.
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"We started taking her to hospital every other month, because it was always something - pain, massive stomach distension, being sick - and, eventually, malnutrition. In the last 60 months, she has spent 47 of them in a hospital bed."
Despite countless hospital visits, Charlotte's medical team remained baffled by her condition, though they acknowledged her severe malnourishment. By 2021, she required feeding through an NG tube as she couldn't retain food.
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Her mother then sought a second opinion from a private radiologist who specialised in diagnosing SMA. Following a thorough elimination process, he identified Charlotte as having the rare condition that impacts an undetermined number of individuals across the UK and affects just 0.3% of Americans.
He informed the family that her survival depended on undergoing the Alvear procedure - an innovative treatment not yet accessible within the UK. However, in the US, this operation can exceed £30,000 in cost.
Leanne explained: "It's such a short procedure - it only takes one-to-two hours, if everything goes well - and it could save Charlotte's life. It's her only hope."
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Charlotte said: "I have been struggling for way too long with the illness. It's really hard to deal with day-to-day.
"I feel like my life has stopped - the world continues to go round and I'm stuck in the same place. I wouldn't wish this on anybody, I just want a normal life - and I don't think that's asking much."
To help generate the necessary funds for her daughter's treatment, Leanne has launched a GoFundMe campaign.