Ahead of Rare Disease Day, Ian tells us of how he recently developed achalasia and of the community he has found via the RARE support group created by Annie-Rose.
Ian has helped raise awareness of achalasia by creating an Instagram page documenting his journey. He has also found a support community via the RARE support group created by Annie-Rose.
In support of Rare Disease Day, Ian has shared with us his story of finding out he had achalasia, and his experience of choosing between different possible treatment options. Of the support he has received from the online community of people with achalasia and other rare diseases, Ian says:
“We really do understand each other, and the struggles we have all experienced; it’s created that special bond between us all.
It’s a great place for advice, or just to have a rant when you are having a bad day. This has been so beneficial to me, especially as everything is still so new.
Everyone is so supportive, and it just builds your confidence. I know if I needed to talk to anyone on there, someone would be there for me”
Please comment on and re-share Ian’s story to increase awareness of this rare condition and to unite for a rare swallowing condition. You can find out more information about getting an achalasia diagnosis, and about different forms of treatments on Achalasia Action’s website. If you need support on living with achalasia, contact us on info@achalasia-action.org or on 0300 772 7795.
Ian’s Achalasia Story
I’m pretty new to my Achalasia story. I went to my GP in August of last year after spending most of the year with issues in swallowing food. It got to the point when the issues happened every meal, and I was regurgitating a lot too. After seeing my GP, they referred me to see a Gastro Consultant at my nearest Hospital. My first consultation was in October. After this, it was arranged that I would have a barium swallow test and a manometry test. I ended up having both these tests in the same week in November. Whilst waiting for the results, my swallowing was getting worse, and I was also referred to a Dietician. They offered me advice on what foods and drinks to try and what to avoid. They also prescribed me meal replacement shakes, which have helped so much, especially over the Christmas period, where I also suffered a throat infection.
At the end of January, I had an appointment with my consultant to discuss the results of the barium swallow and manometry tests, and to then discuss further treatment. During the consultation it was confirmed that I have Achalasia Type 2. Treatment options were discussed, and it was decided on a pneumatic dilatation procedure. This was booked for February. On the day of this procedure, the specialist who was performing the procedure said he doesn’t like to perform this type of procedure due to the high risks involved. So he told me that what he would do is inject botox into the muscle to help relax the muscle and give me a bit of time, and to help me to eat and drink a bit better. He would then book me into his clinic to talk about surgical treatments that he thinks would benefit me greatly.
And that’s where we currently are; the botox injection has so far been successful and has helped me massively with eating and especially drinking. I am now waiting for a consultation to discuss which surgical route to go down, either a peroral endoscopic myotomy (POEM) or a Heller myotomy……
I started an Instagram page following my journey, as I thought this would be a great way to help educate others on this rare condition, plus it’s a good way to help me deal with everything. Whilst doing this, you also search for other people who are maybe suffering with Achalasia, just so you can follow their journey, and maybe take inspiration from them. This is when I came across CHRONICALLY_INVISIBLE_ , and she wanted to create a RARE SUPPORT GROUP. She created a group chat and we now have 20 members involved. In such a short time this has evolved into more than just a group chat; it’s managed to bring together so many people who have struggled individually with Achalasia and other rare conditions, and who have never really had that person who they could turn to and who truly understands what they are dealing with. We really do understand each other, and the struggles we have all experienced; it’s created that special bond between us all. It’s a great place for advice, or just to have a rant when you are having a bad day. This has been so beneficial to me, especially as everything is still so new. Everyone is so supportive, and it just builds your confidence. I know if I needed to talk to anyone on there, someone would be there for me. Hopefully in the future I would like us to all meet up, and maybe come up with ideas to help raise awareness of Achalasia and other rare conditions.
