Meetup for support with other local sufferers and survivors of the oesophageal disorder, Achalasia. Achalasia is diagnosed when the esophagus is less able to move food toward the stomach and the valve from the oesophagus to the stomach does not relax as much as it needs to during swallowing.
The Achalasia Group is a ‘Meet Up’ Group run primarily by Amanda Ladell and her colleagues where anybody affected by achalasia can meet together at a London hotel for informal chats on a Sunday afternoon once a month, by communicating through the Meet Up website.
The group collaborates with the Oesophageal Patients Association (OPA) where Upper GI surgeon Majid Hashemi is the achalasia medical advisor. Majid met together at University College Hospital some years ago with Alan Moss and David Holden from the London branch of the OPA to discuss ways of bringing achalasia patients together in a way similar to the OPA meetings for post-oesophagectomy patients. This has resulted in larger additional meetings, run about twice a year, held at the Hospital of St John and St Elizabeth, St John’s Wood, London where the format is often a talk given by a medical specialist www.opa.org.uk
This meeting is probably the largest achalasia patient gathering in Europe. We have had people attending from Sheffield and Cardiff and feel that there is a great unmet need for support.
We have run research exercises to find out what food causes achalasia patients most problems. We exchange tips on how to cope with the condition on a practical day-to-day basis. We circulate notes from those meetings to people who are unable to attend, and have effectively created a forum for exchanging information about this rare condition. We have made links with equivalent groups in Europe and America, and have a booklet ‘A Patient’s Guide to Achalasia’ in the course of preparation for publication.
The overall patient experience is often one of spending a long time before the diagnosis is made. Young people can sometimes be misunderstood, or mis-diagnosed with eating disorders such as bulimia. There can be severe effects from under nourishment. As with many rare conditions, knowledge about it amongst the medical profession can be very patchy. It is therefore our main objective to promote knowledge and understanding of the condition primarily to the sufferers, diagnosed and undiagnosed; and then to encourage more interest, and even research, amongst the medical profession.
ADVANCE ASSESSMENT OF OESOPHAGEAL MOTILITY IN ACHALASIA
On 9th March, Dr. Anthony Hobson was invited to give an illustrated talk at the Achalasia patients meeting.
The meeting was arranged by Amanda Ladell, Alan Moss and Mr Majid Hashemi to discuss achalasia issues. There were approximately 30 people present, of which 25 had the achalasia condition.
To download a copy of the full presentation notes, including slides please click here: NOTES OF ACHALASIA PATIENTS MEETING HELD ON WEDNESDAY, 9TH MARCH 2016
More information on the London Achalasia Meet Up group please visit:
or feel free to contact Amanda Ladell directly by e-mail: firstname.lastname@example.org