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A new leaflet: Achalasia in the Young

Achalasia Action

Although achalasia is often diagnosed later in life, there are a number of cases where children suffer from the condition. Achalasia can affect perhaps 3 or 4 in a million children and it is important that they receive specialist help from paediatricians who have long-term experience and familiarity with achalasia. Treatments and medication often need to be adjusted to take into account their effects on the size, growth and development of children.

We organise meetings for parents of children with achalasia so that they can exchange experiences and helpful information. In January 2023, we produced a leaflet Achalasia in the Young that helps to describe achalasia, and hope that this will be available at clinics where achalasia is diagnosed in children.

Austin – aged 14

“Achalasia made me feel like my chest was hurting and racing at different times of the day, my parents thought it was my heart, but the tests didn’t reveal anything…after a few months I started vomiting loads of times a day, and then I went into hospital for a barium meal”

Leo – aged 11

“When I eat, the food gets stuck and my throat feels restricted and tight. I find it difficult to breathe”

“Because I cannot eat properly, I feel tired all the time and I have no energy. I find it difficult to keep up with my friends at school and in sports”

“I would like to enjoy McDonald’s like my friends can but I know that the food will just get stuck”

“Living with Achalasia feels very lonely because it is very rare and hard for people to understand”.

Guto – aged 8

“It’s rubbish being sick all the time and not being able to eat like my friends. At Christmas I had a Xmas football party, all the boys ate pizza and chips, I couldn’t eat the food as I know I wouldn’t be able to swallow it properly and would need to vomit, so it was better for me to sit next to the boys without eating, I felt so uncomfortable and some of the parents noticed this. I am very lucky as I am peg fed so if I don’t eat much during the day I get my food through the peg. I also cannot drink a lot of water as it sits in my oesophagus so I take my water intake through the peg”.

Parent of a child with achalasia:

“It does seem like it is the effect on social occasions which is most upsetting for the children. I heard about one teenage girl who was not invited to a birthday meal out with friends because the parents of the birthday girl thought it would be a waste of money if she wasn’t going to eat anything!”

Download Achalasia in the Young leaflet here

Lorien smiling and holding a black puppy

Lorien Schipperus’s Achalasia Story

On Rare Disease Day, Lorien tells us of how her achalasia was misdiagnosed and of how important it has been for her to receive support from her family, friends and the wider achalasia community