On Rare Disease Day, Morven shares with us her experience of being diagnosed with achalasia at the height of the COVID-19 pandemic.
Morven is 24 and was diagnosed with achalasia during the COVID-19 pandemic. When diagnosed, she accessed an achalasia forum, but felt overwhelmed by it. However, she has since found a supportive achalasia community on Instagram and through following Annie-Rose’s Instagram account.
Of the supportive achalasia community she has found on Instagram, Morven says:
“I have found this to be the most positive way to hear about others’ stories and how they are getting on in day to day life.
I particularly enjoy following Annie-Rose (@chronically_invisible_) as we are the same age. It’s nice to see someone navigate similar life experiences with this condition as I am.
The more I surround myself with people in the same situation, the more I realise the condition is manageable and I will be okay.”
Please comment on and re-share Morven’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. You can also join our Achalasia Action Facebook Group and follow us on Instagram and X (formerly Twitter).
Morven’s Achalasia Story
Hi! I’m Morven, and I am 24! I was diagnosed with Achalasia in November 2020. I began waking up in the night with coughing and reflux. I initially started medication for heartburn but it didn’t even begin to alleviate the symptoms I was experiencing. I started regurgitating at the height of the COVID-19 pandemic. This was scary as I couldn’t physically see a doctor and I had no idea what was wrong with me. The waiting times to be seen were extremely long and I lost a lot of weight. I was very very fortunate that my parents paid for a private diagnostic gastroscopy and I was diagnosed with Achalasia after this. A manometry test confirmed I had Type 2 Achalasia.
I’ve since had two dilatations which have been very successful in easing my symptoms. I feel very lucky that this has been the case and am enjoying life to the fullest as I know my condition could progress at any time. I restored my weight loss and don’t feel too restricted in what I can eat, which is amazing. Achalasia still affects me every single day, but it is something I’ve learned to live with and deal with.
I mainly interact with other people through Instagram. I have found this to be the most positive way to hear about others’ stories and how they are getting on in day to day life. I remember after my initial diagnosis reading a forum and it was all very overwhelming and negative, so seeing a more detailed insight into everyday life from people has been amazing. I particularly enjoy following Annie-Rose (@chronically_invisible_) as we are the same age. It’s nice to see someone navigate similar life experiences with this condition as I am.
I feel very fortunate with how my Achalasia is managed. The more I surround myself with people in the same situation, the more I realise the condition is manageable and I will be okay. I know that in the future, I will almost certainly need more treatment. But for now I am blessed to be supported by those around me and to be navigating this condition with them!
