Dannii’s Story – Achalasia

Tell us a bit about yourself 

“My name is Dannii and I’m 35 years old. I’m a secondary school PE and science teacher. I’m a mum to Florence and Ottilie, who I share with my husband Simon. Exercise has been a huge part of my life since I could walk. I started kicking a ball when I was 4 and had a career in football from the age of 16.”  

When did you notice your first symptoms? 

“When I was 16, I won a scholarship to the FA National England player development centre. It was an incredible experience. 

I was 18 years old when I noticed my first symptoms. I tried swallowing rice but noticed it was stuck in my throat. I also experienced reflux and pains in my chest. It was a gradual show of symptoms over a couple of months.  

I chose to ignore these symptoms as I didn’t want to be unfit for selection. Eventually I did go to the England FA doctor. When they told me it was probably reflux, I sighed with relief.” 

How were the next couple of years? 

“My symptoms continued. I went to my GP, but I was repeatedly told it was reflux. I was working as a teaching assistant, as well as playing for Birmingham. It took me over an hour to finish a meal. I was losing weight and struggling to stay hydrated. 

I came in from work one day, took a sip of water and my throat locked. It went into a spasm. I couldn’t breathe. In my head I was choking. I was by myself and the only thing I could do was to throw up the water. I couldn’t hide it anymore. My doctor finally referred me that week.” 

How long did it take for you to be diagnosed?  

“It took a full year after being referred to get my achalasia diagnosis. My consultant was brilliant. He never gave up or made me feel like what I was experiencing wasn’t real.  

I struggled in the early days to describe my symptoms. I remember the turning point being when I described it as a ‘functional problem.’ My food wasn’t going into my stomach. Your throat should contract, but mine isn’t. He decided to send me for a barium swallow test, where I was finally diagnosed with achalasia.”  

How did you feel after your diagnosis?  

“I finally had a diagnosis and a plan to help improve my symptoms. I was going to have the heller myotomy surgery, with the aim to improve my swallowing. I felt like there was a light at the end of the tunnel – this operation could improve my quality of life! I was also scared; I’d never heard of achalasia before. My consultant told me this condition is rare, and there is no cure. 

I was diagnosed in October, and my surgery wasn’t until January. I joked with my consultant that this was a good thing as I didn’t want the surgery interrupting my Christmas dinner, he joked back that I couldn’t have it any way as I can’t swallow it!  

The period between diagnosis and my operation was tough. I was still losing weight and I was put on a liquid diet. I’d hide from colleagues at lunchtime, but I was terrified to eat on my own too. I feared something would get stuck again. I stopped eating out through fear of embarrassment.  

I was featuring a lot for England’s under 23’s team. I was so close to being a part of the England squad. I felt this condition was going to take this all away from me.” 

How did your surgery go? 

“I had my operation on the 25th January 2010. I remember this as it’s also Simon’s birthday. It was a tough recovery. Two weeks after my operation I saw an advert of a puppy that needed rehoming, called Nellie. That night we brought Nellie home. As I was still recovering Simon looked after Nellie, who cried all night! He still likes to bring this up, since he’d never had a dog before. Unfortunately, Nellie passed away earlier this year. She provided me with so much strength and focus in times of real struggle and I will always be grateful for the support she provided without even knowing.  

I didn’t want achalasia to affect my football career any longer. I was back training 7 weeks after my operation. I signed for Chelsea that March. My first game was in April, which happened to be the first game of the FA Women’s super league. I was so proud of myself. 

Sadly, it became apparent over the next 6 months that I couldn’t continue at this level of football. I was struggling to hydrate, and I couldn’t eat the high carb diet. I decided to retire. I felt bitter, I felt like achalasia had taken away my love of football.” 

How is your life now? 

“I view my life as before achalasia and now. I have a really good quality of life now in comparison to before my operation. Your digestion is so integral to your overall well-being and health. It’s often overlooked by those who don’t suffer from a digestive condition.

Achalasia causes me anxiety, and running is my outlet. My stresses disappear when I run. It proves to me I’m still strong and healthy. I’m able to run – how lucky am I? 

I haven’t completely left football behind. Every week we have a staff 5-a-side football night, which I love!” 

Why are you sharing your story? 

“I remember after my operation I googled achalasia for the first time and found an online forum. I was so overcome with emotion reading other people’s  experiences, for the first time I wasn’t alone. It was so empowering.

If one person reads this story and feels the same, I’ll be happy. It’s important for people to know it’s not just them. A problem shared is a problem halved.”  

WHAT YOU CAN DO:

If you are interested in supporting our work in upper GI conditions, which has been underfunded for too long, please donate today. Discover the stem cell research we have funded into achalasia here.