Ahead of Rare Disease Day we are sharing Annie-Rose’s achalasia story, and highlighting the support she has found by creating an online community and support group.
Annie-Rose is an actor who lives with achalasia, and has helped raise awareness of the condition via her @Chronically_Invisible Instagram account and by starting the ‘RARE’ support group, where members talk and share their experiences everyday.
In support of Rare Disease Day, Annie-Rose has shared with us her story of getting an achalasia diagnosis and the treatments she has received. Of the impact that achalasia has had on her life, and the benefit she has experienced from being part of a supportive online community Annie-Rose says:
“This disorder has truly changed my life. It’s made me my own advocate and made me realise that I must use my voice to be heard. I knew something was wrong with my body, and I am so thankful to my family for helping me push for answers when I didn’t have the strength to.
Over the past 8 years, I’ve dedicated a lot of time creating a platform where I speak openly and honestly about my Achalasia Journey, in the hope that someone who is going through the same thing, doesn’t feel alone.
My aim is to help, even one person, feel less alone and finally be heard. I am blessed to be a part of such a wonderful community of people who are so strong, supportive and driven to make a change.”
Please comment on and re-share Annie-Rose’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.
Annie-Rose’s Achalasia Story
I’m Annie-Rose Tate, I’m 24 and from North Wales. I’m an actor living with Achalasia Disorder. I’m also a keen advocate for Invisible disability awareness. Back when I was 16, suddenly I got very sick. It was almost like someone had pressed a button. It started to hurt when I ate, and progressively got worse, very quickly. At first when I ate, I would get a stuck sensation in my chest, which would remain there for a few minutes until passing. I noticed this wasn’t going away, so I attended a doctor’s appointment. I was told it was just stress related, as I had exams at the time, and to go home and rest. A few days went by and food was becoming more painful to swallow. This was when I first regurgitated after a meal. I was frightened and had no clue what was wrong. It all happened very quickly and before I knew it, I was regurgitating after every mouthful. I noticed my weight started dropping and thankfully my parents helped me push for answers from my doctor. Again, they took my bloods, told me it was stress related and that I just needed to go home. This went on for 6 weeks.
I remember this time being hell on earth for me and my family. I lost 3 stone. Water was becoming hard to swallow and I was even past the point of being hungry. I just remember being so thirsty and dehydrated. One morning, I remember feeling fuzzy when I stood up out of bed, and my parents took me straight to the hospital. It was then when the topic of “eating disorders” was first mentioned to me and I remember feeling so helpless because no matter what I said, I wasn’t being believed. “It hurts when I eat”. “I’m not making myself sick”. They scheduled me in for a barium swallow which finally gave them an answer. Achalasia Disorder.
I was told I had Achalasia on my own. It was the morning on the ward and the Doctor didn’t go into too much detail of it. I honestly thought I would be given some medication and be able to go home. I was very wrong. I was transferred to another hospital with an Achalasia Specialist and that’s when my journey began. When I first met with my consultant I felt immediate ease. He explained to me what Achalasia was and how my swallowing will never be normal again, but how he was going to help me find relief. He scheduled me in for a pneumatic dilation and prepared me for what the next few weeks could look like for me.
The dilation gave me the relief I needed to get me through Christmas, but in January 2017, I was taken in for the Heller myotomy (HM) surgery. It was a hard few months of recovery, mentally and physically, but the HM surgery helped me for a year before my symptoms worsened again. To this date, I’ve had 8 dilations and I’m now researching possible treatments for the future. This disorder has truly changed my life. It’s made me my own advocate and made me realise that I must use my voice to be heard. I knew something was wrong with my body, and I am so thankful to my family for helping me push for answers when I didn’t have the strength to.
Over the past 8 years, I’ve dedicated a lot of time creating a platform where I speak openly and honestly about my Achalasia Journey, in the hope that someone who is going through the same thing, doesn’t feel alone. I am constantly educating myself and learning more about Achalasia. Since I started @Chronically_Invisible, I’ve found the most supportive community online. To be able to share my journey with others who have such similar experiences is just incredible. There is never judgement, just open arms. I’ve recently started my own ‘RARE’ support group where we talk everyday. It’s really helped me feel less alone dealing with this condition. I only wish that I found this sooner. My aim is to help, even one person, feel less alone and finally be heard. I am blessed to be a part of such a wonderful community of people who are so strong, supportive and driven to make a change.
