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I thought I had asthma for 17 years

Niki was wrongly diagnosed with asthma as a child, when in fact she had EILO. Now after treatment, she's enjoying her life, without anything getting in the way.

Niki was misdiagnosed with asthma

I’d always been an active child and was one of the fastest runners in my year.

But in my second year of secondary school, I started getting really breathless. I started wheezing, and I couldn’t keep up with my sports anymore.

We went to the doctor, who said: “she’s got a touch of asthma.” 

They sent me away and gave me some pumps. But nothing ever worked. 

I felt really unhappy, and had to stop playing sports. But I convinced myself that this was just what all asthmatics dealt with and that I was being a wimp.

That was how it went on, for 17 years. 

I went back to the doctor

When I was 24, I moved into a new flat, on the second floor. My brother and mum were helping me with redoing the bathroom.

While carrying the tiles up the stairs, my breathing became so bad that my brother spoke up, and said he thought something was seriously wrong with me - that there was no way it was just asthma. 

When my brother heard my breathing, he said there was no way that was just asthma. 

That convinced me it was time to go back to the doctor, so I returned to my local GP surgery and told them I thought something else was wrong. They gave me a new bundle of asthma pumps and things to try, and lots of tests where you blow into tubes. 

The nurses said I had signs of asthma, but now, rather than it being a certain diagnosis, they weren’t totally sure. 

I had to fight to be listened to

I ended up seeing a consultant for 3 years, and had every test under the sun, from ECGs to a bronchoscopy. But nothing showed up, because my symptoms only flared up when I was exercising, and all these tests were done when I was resting, normally after I'd been sitting in a waiting room for 20 minutes!

I had to really fight to get my consultant to listen to me.

Finally, I got so frustrated with not being listened to that I told them I was going to go run up and down the stairs a few times, then come back! They sent a nurse with me, who I ended up feeling so sorry for because once I was done, I was so breathless he had to stop me from falling over!

It worked, though. After I came back in, consultant finally realised something was a bit different to normal. 

I was diagnosed with EILO 

Things happened quite quickly after that. After a few referrals, I met Dr Hull, who gave me a quick examination and almost immediately diagnosed me with exercise-induced laryngeal obstruction, or EILO for short.

He told me that as a disease, it's relatively unheard of, but I had all the symptoms. And that out of the 4 levels you could have, I had the highest, worst one. 

After seeing several physios to see if I could fix it with breathing exercises, we made the decision that I needed to have surgery and about 6 months later, I went in for the operation.

The operation was 100% a success

As soon as I woke up from surgery, I noticed that I could breathe deeply

It was a very straightforward procedure. I had some flappy bits above my vocal chords, that were causing problems by blocking my windpipe. That was what was causing the wheezing. My surgeons froze and cauterised those bits, which stopped the muscles from doing what they were doing. It only took an hour. 

I noticed that as soon as I woke up that I could breathe deeply. My ‘asthma’ was completely gone. The surgery was 100% a huge success. 

Now, when people ask me what it's like, I just say it’s crazy! And so weird! But in a good way. 

It changed my life

After 17 years of being unable to walk down the street and hold a conversation at the same time, my breathing difficulties had just disappeared.

Now I can do basic things like carry my shopping up the stairs, without having to sit down for 10 minutes. It's silly, but it really is the little things I notice.

My friends keep saying how much more active I am. Now, I can play with my nephew, and chase him down the street - before, I couldn’t even make it around my mum’s tiny garden! 

I love that I can be active again, just like when I was a child. Even though I keep a very healthy diet, I’ve put on weight because I couldn’t exercise at all. Now, I’m back at the gym, and I’m even kayaking!

I'm getting on with my life, with nothing getting in my way 

Even though the surgery was relatively recently, I still get really emotional talking about it. My EILO impacted my life in such a huge way. Now, when I jog to the top of my stairs, I take a deep breath and remember how even a few years ago, I couldn’t have done that. I’m getting on with my life, with nothing getting in my way. 

If you’ve been diagnosed with asthma, and the pumps don’t work - don’t give up! If I’d spoken up when I was a teenager, I would have discovered my real diagnosis much sooner. 

It’s not the doctors’ fault that they haven’t heard of EILO. But there will be a doctor out there, like Dr James Hull, who will know what’s wrong.

Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!

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17 October 2018