Will you remember Guts UK in your Will this Remember A Charity Week?

This September, Guts UK is proud to take part in ‘Remember a Charity in Your Will Week’, taking place from 8–14 September. As part of the national campaign involving charities up and down the country, we’re taking the opportunity to showcase the incredible difference you can make by leaving a gift in your Will to Guts UK. 

To coincide with Achalasia Awareness Month, we caught up with Leanne, a 35 year old mum of three from Barnsley, living with end-stage achalasia. Leanne has previously shared her story with Guts UK and candidly updates us on the deterioration of her condition, in the hope of inspiring others to support our charity. In support of Guts UK, Leanne also visited the BBC Radio Sheffield studio to share her story on air.

“There isn’t a cure for achalasia yet and probably won’t be in my lifetime. For me, nothing has fixed it. Every time there’s hope, there’s then disappointment when my symptoms return. It’s exhausting both physically and emotionally.

“I hope that with the support of gifts in Wills pledged to Guts UK, research can be funded into finding kinder treatments to help those with achalasia and other digestive conditions in generations to come.”

About achalasia:

Achalasia is a condition that hinders the passage of food and fluid down the oesophagus (gullet) from entering the stomach, which leads to difficulty swallowing. It is uncommon, affecting 1 in 100,000 new patients in the UK each year.

Leanne’s diagnosis:

Leanne’s symptoms began when she was just eight years old. By nine, she was struggling to swallow even a few bites of food, often running to the toilet to bring meals back up.

After investigations, including a barium swallow test (a test that involves drinking a white liquid called barium that highlights the outline of the oesophagus and the food pipe), Leanne was diagnosed with achalasia.

Talking about her first surgery, aged just ten, Leanne said: “I was rushed in for a Heller myotomy (a surgical procedure that cuts the lining of the oesophagus and stomach) because I was so malnourished. I could’ve died. The food stuck in my oesophagus had started to rot.”

Leanne’s treatments for achalasia: 

For years, Leanne underwent procedure after procedure to try and keep her oesophagus working, including a balloon dilatation which gave her six years of relief, but the symptoms always returned. “For a while I could eat more freely, and that gave me back some normality. But achalasia always comes back.”

In 2022, Leanne’s health drastically declined, and she was admitted to hospital as an emergency. Talking about the experience, Leanne opens up: “I couldn’t swallow anything, not even water. I 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.”

Following her hospital admission, Leanne underwent POEM surgery (Peroral Endoscopic Myotomy), which is where a camera is passed through the mouth and instruments are used to cut the muscles in the oesophagus, which helps food and drink pass through more easily, reducing the symptoms of achalasia.

Talking about her recovery from surgery, Leanne said: “I was meant to stay one night, but I ended up in hospital for nearly a week. The pain was awful, and the spasms afterwards were severe. It took me a couple of months before I felt even a little better.”

The surgery offered Leanne some relief, and she was slowly able to eat and drink again. “After the surgery, I had a jacket potato for the first time in years. That might sound small, but it felt amazing. I cried with relief. But in the back of my mind, I was terrified it wouldn’t last.”

End stage achalasia:

Leanne has had no further treatment since her POEM surgery in 2022 and today is living with end stage achalasia. Reflecting on the treatments she has had and the damage that has been caused to her oesophagus, Leanne said:

“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.”

End-stage achalasia means Leanne’s oesophagus no longer functions properly, and there are very few treatment options left. Talking about the future, Leanne said:

“My new consultant has mentioned an oesophagectomy (removing the oesophagus completely), but it’s such a high-risk surgery, and the recovery would take a year. I don’t know if I’m ready for that.”

“Sometimes I am tired of living with this condition,” Leanne admits. “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.”

Challenges Leanne faces living with achalasia:

Achalasia affects every aspect of Leanne’s life, from meal times, to family life and forming relationships.

“At the moment, I live on smoothies and water. Sometimes I try solid food with painkillers, but it’s so painful, and I’m scared of my oesophagus perforating. I’ve choked before, I’ve aspirated food into my lungs, and it made me really poorly. Every meal is a risk.

“Food is such a big part of life, of celebrations, of togetherness. Achalasia takes that away. Sometimes I feel very alone. I don’t sit at the table with my girls. I cook lovely meals for them, but I can’t eat them. They get upset and try to look after me, but I don’t want them to feel like carers. I just want to be a mum.”

Talking about forming relationships, Leanne said: “I push people away sometimes because I don’t want to be a burden. I’ve had partners in the past who struggled with my condition, or didn’t like my scars. That really hurt. You look ‘normal’ on the outside, but inside it’s a constant battle.”

We’re pleased to hear Leanne has begun a new relationship with a supportive partner who is by her side as she navigates life with achalasia. “We’ve been together for six months, and it’s going really well. They’ve been amazing, patient, kind, and understanding. They even come with me to hospital appointments. I’ve never had that kind of support before.”

Your gift, your lasting legacy:

For Leanne, and many supporters of Guts UK, we’re more than just a charity. We’re a lifeline and a community. A pillar of hope that one day, digestive conditions will receive the attention they so desperately deserve.

Talking about connecting with Guts UK, Leanne said: “When I’ve been in hospital, Guts UK have always been there for me. Once, when I was really unwell, they sent me a t-shirt and a few thoughtful things. It might sound small, but at that moment, it reminded me I wasn’t alone.

“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.”

When we asked Leanne why people should leave a gift in their Will to Guts UK, she replied:

“Gifts in Wills are vital for charities like Guts UK because they provide sustainable funding that helps support research, raise awareness, and improve care for people affected by digestive diseases. With enough support, we can make sure no one faces these conditions alone.”

Find out more about gifts in Wills