achalasia action logo

Spasms: Can you help with a new and exciting research project on spasms?

Achalasia Action
Spasms: Can you help with a new and exciting research project on spasms?

One of the most distressing symptoms experienced by achalasia patients are painful spasms emanating from the oesophagus, often without any obvious trigger. A previous survey conducted by Amanda Ladell for Achalasia Action included 57 people and found that 70% of those surveyed had experienced spasms which can occur before or after treatment.

See a summary of the survey

Pain from spasms has also been one of the most recurrent themes raised in patient meetings and whilst patients report that it is one of the most difficult symptoms to live with, medical specialists confirm that it is one the most difficult to diagnose, categorize and to treat.

We are therefore very keen to support a new project looking at how spasms can be better diagnosed and medically treated. We have been working with Dr Stefan Antonowicz from Imperial College on this. One of Stefan’s colleagues has undertaken a review of all the written material on achalasia which concluded that there was not much recent or relevant material on achalasia. In particular there is nothing on spasms and, as clinicians vary in their treatment, a proper clinical study of how to treat spasms is needed. This will firstly categorize spasms, secondly recruit volunteers and finally trial the various options for treatment. The study will be carried out by Stefan at Imperial College but also Upper GI surgeon Mr Sach Kumar from The Royal Marsden. It will take around a year to get everything in place and get the project up and running.

Volunteers will be needed for this project in due course so please watch this space and look out for a shout out in the newsletter if you are willing to participate (sign up here for the newsletter if you haven’t already done so!). Previous respondents to Amanda’s survey may be contacted to seek their further participation.

One of our fundraising aims for 2023 is to build a fund of £10,000 to enable the charity to make a contribution alongside other funding partners to the cost of this research project. If you would like to contribute you can do this by navigating to the donate page.

If you are experiencing pain and spasms, please read the information and tips in the “Living with Achalasia” booklet or see information on Pain and Spasms here.

Lorien smiling and holding a black puppy

Lorien Schipperus’s Achalasia Story

On Rare Disease Day, Lorien tells us of how her achalasia was misdiagnosed and of how important it has been for her to receive support from her family, friends and the wider achalasia community