A woman who is unable to swallow food or drink properly has said at times she feared she would die due to the rare condition.
Leanne Sim, 35, from Barnsley, has achalasia – an incurable condition which limits food and drink from moving down the oesophagus into the stomach.
The mum-of-three started with symptoms when she was a child and by the age of nine was struggling to swallow even a few bites of food.
Ms Sim, who can only eat “oily or watery food” has spoken about her experiences in order to raise awareness of the disorder, which affects about one in 100,000 people a year.
She said: “It’s relentless.
“People say, ‘I love pasta, I don’t know what I’d do if I couldn’t eat it,’ but for me it’s not a choice.
“I don’t know what it feels like to swallow normally. Even water can get stuck.”
Ms Sim was diagnosed with achalasia aged ten after she was unable to keep anything down.
“I remember one day, the water I drank shot up like a waterfall all on to the floor.
“Then things just started to get worse.”
She said at one stage she was so malnourished and dehydrated, she underwent surgery to cut the lining of her oesophagus and stomach.
“I could’ve died. The food stuck in my oesophagus had started to rot.”
For a while she was able to eat more freely, but the symptoms returned and in 2022 her health deteriorated again she said.
“I couldn’t swallow anything, not even water and went seven days without eating or drinking.
“In hospital they tried to put in a feeding tube, but my body rejected it.
“I couldn’t care for my kids. My daughter said: ‘Mummy, I don’t want you to die.’ I thought about giving up. If I died, I died. I didn’t want my kids to see me suffer.”
She underwent more surgery to cut the muscles in the oesophagus to help food and drink pass through more easily.
Since then she has had no more surgery but now lives with end stage achalasia, which is a severe form of the condition.
“My oesophagus is exhausted.
“If I’d been diagnosed later in life, maybe I could’ve kept it working. But after more than 25 years, it’s taken its toll.”
She is only able to eat things such as “soup, oily potatoes, cheese or stuff cooked in a lot of butter” and said the pleasure of food had been “taken away.”
Ms Sim said she had also had frequent episodes of choking and in the past choked on a jacket potato which led to being hospitalised after the food aspirated her lungs.
Longer term, one of the few treatment options left involves the removal of her oesophagus but Ms Sim because it was high risk she was reluctant to proceed.
She has spoken about her condition to help others and to champion the support she has received from charity Guts UK.
Ms Sim added: “When I’ve been in hospital, Guts UK have always been there for me.
“They’ve given me a safe space to talk openly, to cry if I need to, and to know I’m understood. That support has meant everything.”
