To raise awareness of achalasia ahead of Rare Disease Day, Jack tells us of his experience with achalasia and how others with the condition have informed him more than health professionals.
Jack has helped raise awareness of achalasia by creating a ‘UK Achalasia’ Facebook group which now has nearly 2,000 members who help and support each other daily.
Ahead of Rare Disease Day, Jack shared with us his his experience with achalasia, which caused him to become severely underweight and malnourished, and impacted on his career. Of creating a UK-specific achalasia online support community, Jack says:
“Throughout the last 10 years, the biggest source of knowledge about this condition has come from fellow-sufferers, rather than medical professionals.
I found it extremely frustrating that the vast majority of information I could find was coming from the USA, and the differences in health care systems made it extremely difficult to relate. It was because of this that I created the ‘UK Achalasia’ Facebook group.
With nearly 2,000 members now – it has become a huge source of advice and support and something I wished I had been part of when I first got given the diagnosis.
Being diagnosed with an ‘incurable condition’ and not being able to find out much about it – or hear stories from other people, it was a scary time. I hope that the support given to each other can help to ease some of that anxiety for others.”
Please comment on and re-share Jack’s story to increase awareness of this rare condition and to unite for a rare swallowing condition. You can find out more information about getting an achalasia diagnosis, and about different forms of treatments on Achalasia Action’s website. If you need support on living with achalasia, contact us on info@achalasia-action.org or on 0300 772 7795. You can also join our Achalasia Action Facebook Group and follow us on Instagram and X (formerly Twitter).
Jack’s Achalasia Story
I first developed symptoms of achalasia, with some food getting stuck (namely things like sandwiches) around 2011. I did not think much of this at first, it just seemed ‘normal’. Fast forward to 2013 and I was completing my teacher training. It was during this time that I began waking up in the night, choking and being ‘sick’. Several bedsheets later, I spoke to a GP, and it was suspected that this was ‘reflux’; I was given Omeprazole to ‘fix’ it and suffice to say that this did not do the trick.
I was referred to an Upper Gastrointestinal consultant who requested a gastroscopy. Offered sedation, I said no. The procedure was horrific, I was violently sick and regurgitating throughout – resulting in bursting blood vessels across my face. The consultant said that I should have been nil-by-mouth. I then explained I had been for considerably longer than requested – he said there and then that he suspected it was Achalasia.
I had no idea what this was – a ‘google’ in the car told me little else than it’s a rare condition that was incurable and affected approximately 1 in 100,000 people.
Fortunately (as strange as it sounds to say), I was very overweight at around 148kg. It was for this reason the consultant in my local hospital told me that he wanted to wait for my BMI to come down before proceeding with a Heller Myotomy procedure. Achalasia was then confirmed with a barium swallow, showing the typical ‘bird beak’ outcome.
I left my teaching post, during my newly qualified teacher (NQT) year as my health was unsustainable – by the time I left at Christmas my weight had dropped to 107kg. At this time, I started working for a local company who were fantastic and supportive and made the health struggle as manageable as possible. During this time, I passed out a few times with energy levels extremely low. I was admitted to my local A&E on three occasions, being given fluids to bring up nutrient levels – particularly potassium. There was very little understanding, even amongst health professionals – with a discharge note giving the advice of ‘try eating more bananas’ – not understanding that at this point I was unable to eat anything!
I asked to be referred to St Thomas’ in London as I was unhappy with my care; the care received from St Thomas’ was faultless. I had another gastroscopy (no sedation again – wild, I know) and a manometry procedure. My weight and BMI continued to drop at an unhealthy rate, ending up at 62kg with a BMI of 17 and falling in the ‘underweight’ category. I was admitted as an emergency for three days prior to the operation to be tube fed, with the aim to ensure I could be well enough for the operation.
This procedure changed my life, though it was not smooth sailing from there. The Heller Myotomy was carried out in August 2014. I returned to teaching in December 2014 and a couple of years later I ended up with Pancreatitis – caused by a gallstone in a bile duct. This pain was excruciating. Now I regularly have pain, which I am unable to distinguish between a ‘spasm’ or a result of pancreatitis.
Jumping to the present day, I am now an assistant headteacher and despite still feeling the effects of my condition, I do not let it dictate my life and I am very fortunate in that sense. There will often be times I struggle to eat a meal – but always try (even if my first port of call in a restaurant is always to ascertain where the toilets are, just in case they are needed).
Throughout the last 10 years, the biggest source of knowledge about this condition has come from fellow-sufferers, rather than medical professionals. I found it extremely frustrating that the vast majority of information I could find was coming from the USA, and the differences in health care systems made it extremely difficult to relate.
It was because of this that I created the ‘UK Achalasia’ Facebook group. With nearly 2,000 members now – it has become a huge source of advice and support and something I wished I had been part of when I first got given the diagnosis. Being diagnosed with an ‘incurable condition’ and not being able to find out much about it – or hear stories from other people, it was a scary time. I hope that the support given to each other can help to ease some of that anxiety for others.
