Welcome to the Achalasia Support Group

 

The Achalasia Support Group welcome those facing gastric difficulties or individuals experiencing difficulty swallowing or eating food. Whatever your circumstances, the Achalasia Support Group are here to offer support, and we hope you will consider joining us at our next group meeting. We meet regularly and details of our next meetings will be updated here regularly.

You may be interested in the factsheet about achalasia produced by CORE charity.

Achalasia is a motility disorder, affecting how food is taken down the oesophagus into the stomach. Normally, the muscles contract in a series of coordinated moves that progressively push the food down, past the lower oesophageal sphincter and into the stomach. This process is called peristalsis. Achalasia often involves the nerve endings of the muscles (rather than the muscles themselves) not working properly. Consequently food simply remains in the oesophagus for longer than it should, and may not pass through the sphincter into the stomach, except by gravity.

Sometimes the sphincter is clamped tight shut. The weight of the food can eventually lead to the oesophagus getting 'baggy.' Food can remain there and ferment, causing the sufferer to have to remove the food through a mixture of vomiting and manual manipulation. It can affect people at quite a young age, and patients often spend a long time before their condition is diagnosed. Young people can sometimes be misdiagnosed as suffering from an eating disorder like bulimia.

If the muscles contract together rather than in sequence, it can cause a very painful chest pain from the muscles going into spasm, often described as if it is a heart attack.


Meeting Schedule 2016

Updated 11th July 2016

Contact Amanda Ladell on 0208 372 9647 or email amandaladell@yahoo.co.uk.

Date                        Time                               Venue                                                     
Sunday 7th August 2016   14:00 Marriot Hotel, 140 Park Lane, London W1K 7AA
Sunday 11th September 2016   14:00 Marriot Hotel, 140 Park Lane, London W1K 7AA
Sunday 9th October 2016 14:00 Marriot Hotel, 140 Park Lane, London W1K 7AA


We request that all members RSVP to meetings so we have an idea of numbers. For further details, or to RSVP, please click here


 

Meeting Venue

Marriot Hotel

140 Park Lane

London

W1K 7AA


 

Our Medical Advisor and guide is Upper GI consultant surgeon Majid Hashemi of University College Hospital:

We have also had a talk from consultant gastroenterologist Rehan Haidry from University College Hospital:


Diagnosis and Treatment

It is important to have a thorough test to arrive at the best diagnosis.   This usually comprises a barium swallow test (where you swallow special liquid that can be watched through an x-ray machine as it progresses); an endoscopy (a miniature camera put down your throat) to examine your oesophagus for any obstructions or other issues; and often a manometry test (a special device that measures pressure at various points in your oesophagus to find out which part is most affected).

Having a thorough diagnosis at an early stage gives a much better chance of having the best outcome at an earlier stage.   So it is important not to assume that one treatment rather than another will always be the best option.

Sometimes, treatment consists of dilatation (stretching the lower oesophageal sphincter by means of an endoscope), or botox.   Sometimes these provide relief on a short term rather than long term basis

Sometimes a myotomy is performed, where incision(s) are made to relax the lower oesophageal sphincter to allow the food to pass through more easily.   But because this may also allow stomach acid to rise, part of the top of the stomach is wrapped around the oesophagus to create a more effective valve.

Very recently a new procedure called POEM (for per oral endoscopic myotomy) has been developed that involved cutting muscles within the wall of the oesophagus.   The procedure is controversial in Britain, and may well not have the support of all surgeons.  

Because the condition is associated with the nerve system, it will not be uncommon for stress and tension to make the problem worse.   Medical interventions will sometimes improve the situation, but avoiding stress and tension, and trying to relax whilst eating and allow food to be digested, will invariably help as a parallel track after medical treatment.   Suffering from achalasia is a very frustrating, stressful and sometimes painful experience that sometimes involved significant loss of weight.

Sometimes medication can help.

Achalasia is a rare condition, and one needs to find a specialist who is familiar with it for the best treatment.

Previous Meetings

The first meeting of the group was in December 2013 when 44 people attended, almost certainly the largest such group in Europe.   The second meeting was held in December 2014.

   
Dr Majid Hashemi at the Dec 13 meeting  


The notes from the meeting in December 2013 are here

The notes from the meeting in December 2014 are here

The notes from the meeting on 8th July 2015 are here

The notes from the meeting on 9th March 2016 are here

There are some tips for sufferers in the notes above, and for anyone suffering from oral thrush, you may find the attached experience of one of the members useful (click here).


Useful Links

Achalasia Internet Forum                     http://www.patient.co.uk/forums/discuss/browse/oesophageal-achalasia-and-spasm-1655
Patient Story - Annie Manning Annie
Patient Story - Greame Greame

 

Getting in touch

If you would like to get in touch with the Achalasia Support Group, please contact Amanda Ladell at amandaladell@yahoo.co.uk or call 0208 372 9647.

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