We have set up a meeting for anybody affected by achalasia in order to discuss issues surrounding the condition. It will be held on Thursday 12 December 2013 from 5pm - 7pm at
3rd Floor, Brampton House
Hospital of St John and St Elizabeth
60 Grove End Road
London
NW8 9NH
Majid Hashemi, an Upper GI surgeon will be there to answer questions and explain things. It will also be an opportunity for people to discuss their condition with others who suffer from the same thing. It is the first time we have done this, and we do not know how it will go, but we are hoping for an informal approach so that people can be at ease. And we will be guided by those present about any future meetings.
If you cannot attend, we will try and summarise the event for those who cannot make it.
And if you have questions that you would like the answers to, and either cannot make the meeting, or would like the question to be asked on your behalf, please let us know.
We would also appreciate knowing how many people are likely to to turn up so that we get the accommodation right. Please let me know of you are intending to come by dropping me an email at opa@alanmoss.demon.co.uk
I had my esophagectomy because of end stage Achalasia. My 'e' was a bleeding ulcerated saggy bag at the end, and I had 3 ops on it previous to having it removed. Since then my quality of life has improved immensely. It is really rare to need an 'ectomy due to Achalasia, my surgeon had done over 700 for cancer but I was his first for achalasia.
I found that there was little support for people who had an 'ectomy for achalasia so I started a Facebook group so that we could support each other with our lived experience of the condition and the operation.
It is a closed group because members did not want everyone to see there posts but if anyone wants to join who has had the op due to Achalasia they will be most welcome. Currently we have 131 members world wide and I always recommend the OPA to them if they live in the UK.
I've just sent through a request to join the Facebook group. I had my E in late March this year due to severe Achalasia, but unfortunately it wasn't successful and I've had multiple complications and surgeries since resulting in a permanent PEJ being inserted. Any support from like minded people would be fantastic!
Hi All. This is great news to hear. I live in Aberdeen, Scotland. I wish I was able and well enough to attend but unfortunately I can't. I have so many health problems after the Oesophajectomy. It would be great to hear about the meeting. Hope to see some responses to it. Thanks x
Hello again. If my hubby is able to return home a bit earlier from work we would definately like to attend Alan. The thing is it will probably be a last minute decision for us. So would it be Heathrow Airport we would fly to.
It is near St Johns Wood tube station, one up the Jubilee line from Baker Street, so my guess is that you might also be able to fly to Gatwick (and catch Gatwick Express to Victoria) or London City airport (3 stops on the Dockland Light Railway and then change to Jubilee line). It is a long way to come though!
How did the meeting go this evening. Ime sad I couldn't make it, recovering, YET AGAIN from another bout of pneumonia. Hope the turn out was good. Would love to hear all about it. Thanks
There was a large turnout - about 44, which means it was probably the biggest ever number of achalasia sufferers in the same room in this part of the world.
Interesting talks from surgeon Majid Hashemi and gastroenterologist Dr Rehan Haidry. We will put the notes from the meeting up on the website in due course.
It was definitely a good thing that so many people could see and talk to each other in the same place, and I am sure that there will be other meetings in due course.
For me (not an achalasia sufferer) I thought that a big issue was the length of time it takes to get a proper diagnosis. It is not just a matter of being able to tell straight away from a barium meal examination, but sometimes this does make a dramatic difference to whether people see a specialist or not. There were some interesting slides showing how the results of manometry tests varied. You can have achalasia-like symptoms if the lower oesophageal sphincter becomes obstructed. Having multiple dilatations sometimes does not work because the precise diagnosis is not made at the early stages, and it was stated to be of great importance to investigate all the symptoms as soon as possible.
One person in the room had had the POEM procedure (an endoscopic cutting of muscles within the oesophageal wall rather than conventional myotomy). It is a challenging procedure for the surgeons with a long learning curve, and the medical jury is still out on the future for it.
Being seen in one of the larger centres of expertise makes a big difference, and getting referred to a specialist in the first place is also a big issue.
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