On Rare Disease Day, Achalasia Action co-founder and Trustee Amanda shares with us her achalasia story
Amanda developed achalasia 30 years ago, and created an achalasia support community by starting the Achalasia Meetup Group. She subsequently co-founded Achalasia Action, the first UK charity solely dedicated to improving the lives of people with achalasia and their loved ones.
To mark Rare Disease Day, Amanda shares her story of getting and achalasia diagnosis and of deciding not to get any surgical intervention. Of creating support meetings for people with achalasia, and subsequently co-founding Achalasia Action, Amanda says:
“One of the biggest factors in keeping me well has been talking to other people with achalasia and learning from them how they manage their condition. I have spoken to thousands of people with achalasia over the years at support meetings in London or online. All with different tales to tell.
I have certainly learnt a lot from hearing the experiences of others and I hope everyone else has too. Friendships are formed at those meetings which have endured because of the shared experiences we have. Connecting with others who really understand the difficulties we all face is so important for our general well-being.”
We are so grateful for everything Amanda has done in support of the achalasia community. Without her, Achalasia Action might never have been created!
Please comment on and re-share Amanda’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).
Amanda’s Achalasia Story
My problems with achalasia first started thirty years ago, although looking back now, I realise I had symptoms such as being slow with eating and drinking long before that, but hadn’t recognised them as a problem. I was first prompted to see my GP with debilitating pain emanating from my chest. I would be left curling up on the floor, taking pain killers but still finding no relief. My GP thought it might be angina and gave me a spray, but it made no difference.
After tests and x-rays etc, angina and aortic aneurysm were ruled out, as was a hiatus hernia. I was sent for an endoscopy which I had done under sedation. Coming round from the procedure I was told that there was nothing sinister found and I may be sent for more tests, but I was never told what they thought was wrong. I heard nothing more and my symptoms seemed to have abated to a great extent, so I didn’t chase them and I just got on with my life. The endoscopy itself (as it has done sometimes after subsequent endoscopies) helped to reduce the pain. Perhaps for me it worked like a mini-dilatation.
After a number of years of putting up with the occasional pain which I now know were spasms and suffering with other separate health problems which are now resolved, I started having more problems with eating. Still, I put up with it, not realising what was going on, but always managing to eat eventually. I then got to the stage where I was losing a lot of weight and knew I had to do something about it.
Seeing my GP again 20 years ago, she told me that Achalasia had been diagnosed years before, but nobody had actually told me this! My new consultant suggested I write a food diary to see exactly what was causing problems. That, I’ve since realised, was the best thing for me to do, as it made me think carefully about everything I was eating and how I ate it. I began to work out what I could eat easily and I’ve stuck with those things as the basis of my diet ever since, gradually adding other things over the years.
It took a couple of years for one reason or another to get all the diagnostic tests done for Achalasia, by which time I was happy with my new routine and my life was better than it had been for years. I could now happily eat out in restaurants as long as I was careful about what I chose to eat.
I was offered a dilatation, being told that I would probably need them every six months, and that there was a 10% risk of perforation. I didn’t like the sound of those odds so enquired about a Heller myotomy. My consultant had only ever performed this by open surgery; the last time having been six years before at a different hospital, so he sent me to see someone else. I was put on a waiting list at that hospital. When eventually I was called with a possible date for surgery, it was at a time when that hospital was all over the news over its problems with MRSA and c. difficile. I thought that was not the right time to have surgery, especially as I was feeling so well by then.
Around this time I had met several people at the Achalasia Meetup Group who had had surgery; although for a year or two they felt it had been a great success, symptoms then started to gradually come back and they were in a similar position to me. However, as the years have gone by, I realise that outcomes have now become increasingly more successful due to the greater knowledge and skill of doctors and greater awareness of patients!
I therefore decided to delay having surgery, while I was feeling so well. I didn’t know whether it was the right decision to make, but I was happy with it at the time. I was having an endoscopy every couple of years to check up on things. Apparently nothing seemed to have changed much, and my lower oesophageal sphincter might even have been less tight than it was!
I try to keep my oesophagus in good condition by being careful with what I do. I always try to empty my oesophagus before I go to sleep at night to minimise the risk from fermenting food and from aspirating it into my lungs. My oesophagus has expanded markedly in the last few years, but I still manage to get to restaurants, and although eating much more slowly, I can still enjoy myself with friends and family.
One of the biggest factors in keeping me well has been talking to other people with achalasia and learning from them how they manage their condition. I have spoken to thousands of people with achalasia over the years at support meetings in London or online. All with different tales to tell.
I have been running the Achalasia Meetup Group for 16 years now, until COVID-19, meeting in a hotel coffee shop every month. Now, having been forced to go online in 2020, we are continuing to meet virtually so more people can join without having to travel. I have certainly learnt a lot from hearing the experiences of others and I hope everyone else has too. Friendships are formed at those meetings which have endured because of the shared experiences we have. Connecting with others who really understand the difficulties we all face is so important for our general wellbeing.
Discussions at the meetings can help provide practical advice for managing symptoms and improving quality of life, with varying answers from each person about what to try. We are all different, so solutions may vary. Treatments can be different too, so hearing firsthand about others’ experiences can be invaluable.
The Meetup Group has gotten bigger over the years with nearly 800 members now. With the support of Majid Hashemi, consultant GI surgeon, we have held regular meetings at the St John and St Elizabeth Hospital in London with some very interesting guest speakers talking to us about various aspects of achalasia. These meetings have been very interesting and informative, and are now held online, with much of the time spent on questions and answers.
It was through these meetings that we realised that we could do so much more to help the achalasia community if we formed a charity. So Achalasia Action was formed in January 2020. Achalasia Action has grown from strength to strength since then. Our informal support meetings have diversified over the years too and are now all held online. Our regular support meeting for anyone with achalasia is usually held on the second Sunday each month. There are also separate meetings for the 18 – 35 age group and one for parents of children with achalasia. There is also a writing group for people with achalasia as it has been shown that creative writing with others has a positive impact on health and wellbeing. Anyone who is joining meetings now or in the future, might be interested in signing up to the Achalasia Meetup Group, to get notifications.
In summary, I’m happy with the choices I made, but things might have been different if I had been given different options when first diagnosed. I have been lucky that my achalasia has mostly been manageable and not too severe. I just hope that continues!
