Annie-rose's Achalasia Journey
Annie-rose Williams is raising money for Achalasia Awareness Organization
Story
Firstly i would like to say hi and thank you so much for taking the time to read my story.
I'm Annie-rose, i'm 18 years old and i have accepted the fact that i cant be fixed.
In November 2016 i fell very ill. I grew fluent with the words " it hurts to eat." After every mouthful of food i would experience pain in my chest and within a few days i couldn't eat at all. My own body was rejecting food by throwing it up almost seconds after swallowing. This then happened with liquids. I visited the doctor almost everyday but no one seemed to understand what was wrong. I began to lose weight drastically and in the 6 weeks of blood tests, dehydration and lack of nutrients i had lost 3 stone. I often found myself chocking in my sleep which resulted in having to sleep sitting up. I was finally admitted to hospital. I was put on a drip immediately, But i still couldn't eat. A few days passed and i was then taken for a Barium swallow. This was an x-ray used to visualize the structures of the esophagus. Little did i know this test would answer all of my questions. Achalasia Disorder.
Achalasia is a rare, incurable and progressive autoimmune esophageal motility disease with only palliative treatment. approximately 1 in 100,00 people are diagnosed with achalasia annually. Achalasia sufferers have damage to the nerves of the esophagus which makes swallowing and the passing of food and liquids into the stomach very difficult and painful.
After two days i was transferred to another hospital where an achalasia specialist was located. I felt hopeful that i finally had answers. The specialist explained to me how rare my case was and how we needed to act quick. So he arranged for me to have a balloon dilatation the next day. This is where the doctor opens the bands of muscle at the bottom of the esophagus with a balloon. I was so happy to come around from the anesthetic and drink water again. I thought this was the end. I was wrong. After just 2 weeks i began throwing food and liquid up. My mum and dad took me back to the hospital straight away,the specialist explained that another dilatation would probably not work but he wanted to try again so it would get me through the Christmas period.The second dilatation failed. I dreaded the thought of being in hospital for Christmas, so i held out until new year. I couldn't enjoy Christmas. I had no energy, i lost more weight and i was depressed. In January i went back to the specialist who told me i would need key-hole surgery if i wanted to eat again. Before i knew it i was booked in for the heller myotomy surgery. i went into theatre on January the 20th.
The surgery lasted 3 hours... but it worked. The next day i was allowed to sip water and it stayed down. I was in a lot of discomfort and pain but i was so grateful i could drink again. I was then placed on a strict liquid diet for 2-3 weeks and then a pureed diet for another 2-3 weeks. My days consisted of soup,soup and more soup. I had to take two weeks off college to recover from the surgery and i also couldn't dance for 8 weeks which was difficult for me as i love to perform. Its now been 6 months since i had the surgery which changed my life. I have gained weight and i can eat again. I still find it difficult and sometimes painful to eat and there are lists of foods i can no longer enjoy. i have acid reflux which is medicated and esophageal spasms which i am learning to tackle. I am extremely lucky to have such supportive family who didn't leave my hospital bed until i was treated and my friends who help me cope with this disorder on a day to day basis.
My life has changed a lot since November. I am now learning to live with an incurable disorder which affects my life daily. I have educated myself with the help of doctors and achalasia awareness organisation. Therefore i want to help the other achalasia warriors out there. I chose to share my personal story from day one mainly to share awareness of this disorder but also to show that just because you cant see my pain, doesn't mean it is not real.
I am asking all my friends, family and even those who don't know me to share my story and if possible please donate. Myself and my closest friends will be walking up Snowdon in september for achalasia awareness month.Me and my mum will also be getting matching tattoos of the achalasia ribbon.please donate. Even the smallest amount will make the biggest difference. All donations go directly to 'Achalasia Awareness Organisation' which help fund research, support awareness events and also help patients in need.
I am an achalasia warrior and with your help, one day we will find a cure.
Thank you for reading my story.
Annie-Rose.
(Donating through JustGiving is simple, fast and secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.)
I'm Annie-rose, i'm 18 years old and i have accepted the fact that i cant be fixed.
In November 2016 i fell very ill. I grew fluent with the words " it hurts to eat." After every mouthful of food i would experience pain in my chest and within a few days i couldn't eat at all. My own body was rejecting food by throwing it up almost seconds after swallowing. This then happened with liquids. I visited the doctor almost everyday but no one seemed to understand what was wrong. I began to lose weight drastically and in the 6 weeks of blood tests, dehydration and lack of nutrients i had lost 3 stone. I often found myself chocking in my sleep which resulted in having to sleep sitting up. I was finally admitted to hospital. I was put on a drip immediately, But i still couldn't eat. A few days passed and i was then taken for a Barium swallow. This was an x-ray used to visualize the structures of the esophagus. Little did i know this test would answer all of my questions. Achalasia Disorder.
Achalasia is a rare, incurable and progressive autoimmune esophageal motility disease with only palliative treatment. approximately 1 in 100,00 people are diagnosed with achalasia annually. Achalasia sufferers have damage to the nerves of the esophagus which makes swallowing and the passing of food and liquids into the stomach very difficult and painful.
After two days i was transferred to another hospital where an achalasia specialist was located. I felt hopeful that i finally had answers. The specialist explained to me how rare my case was and how we needed to act quick. So he arranged for me to have a balloon dilatation the next day. This is where the doctor opens the bands of muscle at the bottom of the esophagus with a balloon. I was so happy to come around from the anesthetic and drink water again. I thought this was the end. I was wrong. After just 2 weeks i began throwing food and liquid up. My mum and dad took me back to the hospital straight away,the specialist explained that another dilatation would probably not work but he wanted to try again so it would get me through the Christmas period.The second dilatation failed. I dreaded the thought of being in hospital for Christmas, so i held out until new year. I couldn't enjoy Christmas. I had no energy, i lost more weight and i was depressed. In January i went back to the specialist who told me i would need key-hole surgery if i wanted to eat again. Before i knew it i was booked in for the heller myotomy surgery. i went into theatre on January the 20th.
The surgery lasted 3 hours... but it worked. The next day i was allowed to sip water and it stayed down. I was in a lot of discomfort and pain but i was so grateful i could drink again. I was then placed on a strict liquid diet for 2-3 weeks and then a pureed diet for another 2-3 weeks. My days consisted of soup,soup and more soup. I had to take two weeks off college to recover from the surgery and i also couldn't dance for 8 weeks which was difficult for me as i love to perform. Its now been 6 months since i had the surgery which changed my life. I have gained weight and i can eat again. I still find it difficult and sometimes painful to eat and there are lists of foods i can no longer enjoy. i have acid reflux which is medicated and esophageal spasms which i am learning to tackle. I am extremely lucky to have such supportive family who didn't leave my hospital bed until i was treated and my friends who help me cope with this disorder on a day to day basis.
My life has changed a lot since November. I am now learning to live with an incurable disorder which affects my life daily. I have educated myself with the help of doctors and achalasia awareness organisation. Therefore i want to help the other achalasia warriors out there. I chose to share my personal story from day one mainly to share awareness of this disorder but also to show that just because you cant see my pain, doesn't mean it is not real.
I am asking all my friends, family and even those who don't know me to share my story and if possible please donate. Myself and my closest friends will be walking up Snowdon in september for achalasia awareness month.Me and my mum will also be getting matching tattoos of the achalasia ribbon.please donate. Even the smallest amount will make the biggest difference. All donations go directly to 'Achalasia Awareness Organisation' which help fund research, support awareness events and also help patients in need.
I am an achalasia warrior and with your help, one day we will find a cure.
Thank you for reading my story.
Annie-Rose.
(Donating through JustGiving is simple, fast and secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.)