The first achalasia story that we are sharing ahead of Rare Disease Day is Natasha Beech’s story.
Natasha has helped raise awareness of achalasia and has created an achalasia support community by publishing her book “Journey in to the A…”.
In support of Rare Disease Day, Natasha has shared with us her story of living with achalasia, and her experiences of getting a diagnosis and treatment. Of the support she has received from the achalasia community Natasha says:
“I wouldn’t have managed my journey without the support and listening ears of my fellow achalasia warriors who I found in groups on Facebook. Having Achalasia can be very lonely.
In these groups, you’re ‘A normal’, you’re not alone, and the support, guidance, recommendations from people who actually know what it is you’re going through have massively helped my mental health throughout the journey.
I believe there needs to be more awareness of rare diseases, it’s difficult enough going through it, without the need to explain it over and over again.”
Please comment on and re-share Natasha’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.
Natasha’s Achalasia Story
Achalasia, and the symptoms that come with it are experienced differently by everyone. But one thing I have noticed, is actually getting the diagnosis to begin with is something that is the same for everyone…I was diagnosed with Non Erosive Reflux Disease (NERD) in 2015, and when symptoms of what I thought was reflux gradually got worse in 2021, I just assumed that it was related. I was struggling to eat, food felt as though it was only going so far down my throat and then coming straight back up again. I was sent for an endoscopy, and then sent for a barium swallow. Results showed I had erosion in my oesophagus and nasal cavity and the swallow picked up a dysmotility in my oesophagus. I was then referred for another endoscopy, this time with biopsies – this concluded that there was nothing to report!
After months of waiting for an answer on contradicting test results, I had lost around two stone. I was told that they believed I had Rumination Syndrome (a psychological eating disorder). They came to this conclusion as I had been diagnosed with Obsessive Compulsive Disorder (OCD), and apparently that comes hand in hand with eating disorders! I refused to believe it and pushed and pushed, but the consultant I was under wasn’t budging… He said that as I was so persistent, he would put me on the waiting list for a manometry test, but that the waiting list for it would be over 18 months as he felt it wasn’t needed at all!
My symptoms gradually got worse and I went back and forth to the doctors. I was eventually prescribed with meal supplement drinks, but still no one seemed to want to help me, as it was thought I had an eating disorder. The weight loss and symptoms became so significant that I ended up in hospital. I was given a new consultant, who sent me straight for this manometry test. Results showed that I had Type 2 Achalasia!
Finally, I had answers, but I had no idea what in the world Achalasia was!
I was kept in hospital and fitted with a nasogastric (NG) tube to try and stabilise my weight. I was then given Botox injections and listed for a Heller Myotomy operation, but the waiting list for that was around 2 years! I was sent home, able to eat and keep down soft and smooth foods… This was such a relief – for 2 weeks! Then the symptoms crept back in! This time I struggled to even keep liquids down. Again, I was back and forth to the doctor and due to frequently fainting through dehydration, I spent a bit of time in hospital on a drip…It became so bad that by this point I had dropped down to 7 stone and was fitting in children’s clothing… I went back to the hospital and was put back on the NG tube.
My dietitian had a plan of sending me home with the tube in place, as I would then have to be seen sooner for the Heller Myotomy, as I would be classed as urgent. Within 2 weeks of being home I received the appointment for the operation. The operation was a success and I couldn’t be more appreciative towards my consultant and surgeon for giving me that basic human right back… But just under a year later, the struggles are coming back. Although nowhere near like before, it’s still anxiety provoking to think I am heading back to that place again! I have recently been for an updated barium swallow and a manometry test – which couldn’t be fully completed due to the pressure in my lower oesophageal sphincter (LOS), as the probe wouldn’t pass through. I am now on the waiting list for a dilation, and trying to manage the symptoms as best I can with what I already know from experience…
But I wouldn’t have managed my journey without the support and listening ears of my fellow achalasia warriors who I found in groups on Facebook. Having Achalasia can be very lonely. All people see is the physiological side of things like the weight loss, or the dashing to the toilet to regurgitate… Then they follow up with unhelpful comments like ‘You should try and eat’ or ‘You should chew a little more’. In these groups, you’re ‘A normal’, you’re not alone, and the support, guidance, recommendations from people who actually know what it is you’re going through have massively helped my mental health throughout the journey.
Not only that, but my husband also uses these groups, and it has helped him understand what I am experiencing better, and he has the opportunity to speak to other family members of people with Achalasia too. He has become my advocate, and is always there to quickly defend me against comments and ignorance from others that don’t know about Achalasia. As after all, this is his journey too, having to sit and helplessly watch his wife in pain, losing weight, struggling to swallow even saliva!
I have documented my journey and the struggles I have faced, in combination with the expectations of everyday life in the form of a book, available to purchase via Amazon. I believe there needs to be more awareness of rare diseases, it’s difficult enough going through it, without the need to explain it over and over again.
