Brandon-Lee’s journey with achalasia has been tough, with years of misdiagnosis and struggles. Despite the challenges, he’s stayed strong, supported by family, friends, and workmates. His story is about not giving up, staying hopeful, and raising awareness, showing others that with the right support, life can get back on track, even if it looks different.
Throughout May, Brandon-Lee’s incredible coworkers collectively walked an impressive 730 miles, covering the distance of all their locations around the country, to raise awareness for achalasia and gather funds for Achalasia Action. To date, they have raised a remarkable £1,085.
“Hello! My name is Brandon-Lee, I’m a bank worker of 4 years, from Chaddesley Corbett in the west midlands, I’m 27 years old, passionate about motorbikes, music, football and games.
I started developing problems with my swallowing in my late teens, accompanied by a lot of sharp pains in my chest, causing sleepless nights, lack of food intake and a fair bit of weight loss. This continued until I was around 22, where it progressively got worse. This was then followed by a lot of doctors’ appointments back and forth for around 16-18 months, and I was being told it was caused by a variety of things, from growing pains due to my age and gym attendance, to stomach acid issues. It wasn’t until I reached the point of severely choking on most of my meals that I pushed harder with the doctors to see what was going on, and was booked in to have a barium swallow test.
The initial swallow test showed the issue straight away, which led to my diagnosis in 2022 at the age of 24. It was such a huge relief to finally know what was wrong, as for the first year or so I’d kept a lot to myself, and was convinced I was making it worse in my head than it was. After the swallow test I had various other tests, a camera through my nasal passage, countless endoscopies, and a lot of A&E trips due to not being able to eat or drink for sometimes days at a time. Luckily, this led to me having a Laparoscopic Heller Cadiomyotomy, and after a month or so recovering I could eat solids again!
Since I’ve had my operation, my life is back to being as normal as possible. I’ve had several oesophageal dilations since the operation to help as and when needed, but unfortunately I cannot continue to have this due to potential risks. Unfortunately, I do still experience issues with swallowing food and I still have pains which can range from light to severe, but nowhere near as badly as I used to. I’m extremely happy with being able to eat what I currently can! I cater myself to a different diet compared to what I used to eat, but it helps me be able to consume enough calories to maintain a stable weight and be able to do things when I want to; this has become my new ‘normal’. Being able to go back to sleeping with less than 6 pillows to prop me up during the night was also an amazing feeling, and not waking up to choking or having to clear my throat out to breathe now is also a huge bonus!
This illness has affected me in so many ways. Physically, I initially lost a lot of weight, going from around 14 stone to just over 10 stone during the process before I was diagnosed. I lost a lot of interest in my hobbies, because of exhaustion I wouldn’t attend the gym, cycle, go to gigs or see my friends nearly as much as I would prior to the complications. Once I’d had the operation things did get better, I did put weight back on and got back to doing activities and being my usual self, which is amazing.
However, not all the issues were physical. Throughout the years from when my symptoms first started, to when they got more serious, and during the diagnosis process and operation, and the going back to having as normal of a life as possible, the mental issues I’ve faced have been immense. I still face a lot of issues with certain foods that I’ve choked on severely. I still get very down about my condition and the issues it has caused me, but I am extremely lucky to have such an amazing group of supportive people around me, my friends, family and work colleagues, and my specialist doctor. Without these people, I wouldn’t be at the stage I’m at physically or mentally; they hold me up when I need it and really show me how much I mean to them on a regular basis. They support me in ways they’re not even aware of and I’m confident in saying I wouldn’t be here if it were not for them. A special mention to my manager at work Beth, who has been such a pillar throughout my last year of struggling and thriving at different times, ups and down, and even organising a charity event for Achalasia Action for me with the girls at work. She’s been an absolute diamond and I’m so grateful to her.
I’m very optimistic about what the future brings and what could potentially be developed to help other people who also struggle with the illness, as it affects different people in so many ways. I wish everyone the best with their journeys, and I hope that sharing this may have helped someone”
Huge thanks to Brandon-Lee for sharing his story with us, and to his coworkers for the incredible amount of funding they have raised for us!
Help raise awareness for Achalasia Action
We invite you to comment on and share Brandon-Lee’s powerful story to help raise awareness about achalasia. By spreading the word, we can unite for this rare swallowing condition.
For more information or support, visit the Achalasia Action website.
If you or someone you know is living with achalasia and needs support, we’re here to help.
Get in touch with us at info@achalasia-action.org or call us on 0300 772 7795.
You can also connect with others in the community by joining the Achalasia Action Facebook Page, and following us on Instagram and X (formerly Twitter).
