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Laura Neale: About My Rare Disease

lneale20lneale20 Member Posts: 2 Listener
edited February 2019 in Guest blogs

Hello! My name is Laura ( @LNeale20 ), I am 26 years old and live in a fairly rural area of Norfolk. I have just graduated from university, and I live with multiple chronic conditions. I share my experiences with chronic illness over on my Instagram at @lazloz20 so head on over if you want to find out more.

It all began around 2003, when I was just 11 years, and thought I was having a heart attack. I was in the car with my siblings, sat in a car park, waiting for my Dad to come back with some food from the shop when this sharp pain hit me in the chest. It gradually got worse and within a few minutes, the pain had spread to my back and into my throat and jaw too. I had absolutely no idea what a heart attack felt like but I was pretty sure this must be it, yet I did not believe it could be as I was so young. Upon finding me curled up in the footwell with tears streaming down my face, my Dad had suggested we go to the hospital but thankfully, the pain gradually disappeared. I went to bed with some residual bruising like pain on my breast bone and in the middle of my back.

 

Over the years, the pain continued to come and go but every doctor I saw diagnosed me with acid reflux/ indigestion even though medicine did nothing, so I gave up searching for answers… until one day when it came back with a vengeance.

I had learnt over time that drinking cold water at the first sign of pain helped it go away but one day, on my way to work, the pain struck me when I was walking down the road without my water bottle. As the office block came into sight, the pain toppled me and I fell to the floor clutching my chest and throat. This was a new level of pain and I knew I needed to get to the doctor’s surgery now so they could see me experiencing one of these attacks and help me but first, I had to get to work. I managed to drag myself in to the office and get some water whilst I waited for the pain to go away. Then my boss came in and seeing me crumpled on the floor, he ordered me to get myself to the doctor or he would call an ambulance. I still did not think that it could be anything bad so I pulled myself together and, with a water bottle in hand, I took myself to the local doctors and explained I was having intense chest pain and needed help. I was rushed through to see a nurse who hooked me up to an ECG. Around this time, the pain was fading but my ECG was still showing up as abnormal after a repeat of the test, so the nurse went to fetch a doctor.

holes and patches shown on stomach area

This was the first doctor to take me seriously and ask me more questions. She did not think it was heart related but instead referred me for tests, including a barium swallow. The other test results were normal, but after just a few swallows of the radioactive barium, it was clear the radiographers could see something wrong on my x-rays. After the test, they showed me the pictures they had taken which showed a narrowing of my oesophagus and spasms. The spasms were what was causing heart like pain and causing it to look unusual on the ECG.

After further tests, I was officially diagnosed with achalasia in Spring 2014. It’s a rare disease with no known cause, which is found in approximately 1 in every 100,000 people. As is common, a few months later, I was unable to eat or drink and although there is no cure, I had I eventually found a great surgeon who opened the entrance to my oesophagus so I could eat and drink again.

With this condition being so rare, many doctors would never suspect it. If you know anyone struggling with any symptoms like mine, please tell them to see their GP and ask about achalasia.

Can you relate to Laura’s experiences? Share your thoughts in the comments below!


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