Hi, I'm Amanda,
I've had achalasia for at least 25 years.
I have been organising the London Achalasia Meetup Group for eleven years now and meeting hundreds of other people with achalasia and learning from them, I now live comfortably with the condition.
The Group is now in the process of forming Achalasia Action (Charity). achalasia-action.org
My 13 year old son was just diagnosed today with achalasia. We are trying to find the best information to help him navigate through this diagnosis. Could you provide me with some good ideas on where to start figuring out how to make this condition livable for him. We live in the US in Arizona and are trying to find a surgeon and hospital that will perform the POEM procedure for him. I would also like to hear long term expectation once he’s had the procedure. What we should expect. I’m so anxious and upset trying to sift through all the information online. I just want my boy to have a long decent life.
