Gwen’s Story

Gwen’s Story

Gwen's StoryI was a healthy, active child until I reached the age of 14. I lived at home with my mum and dad, and my two older sisters.

One day, on May 15th 1995, I developed a severe cough and breathlessness. I had a rare auto-immune disease called Wegeners Granulomatosis (GPA), and ANCA Associated Vasculitis. I became better over time, and lead a fairly active lifestyle.

However, when I was 18 year old, I became breathless upon activity, and started coughing all the time. My consultant told me I had asthma, but I was unresponsive to treatment.

When I was 23, I fell pregnant with my first child. I became very poorly because I had pre-ecampsia – however, this just made my existing breathlessness much worse. Eventually, I was diagnosed with having a subglottic stenosis, and was told I would need emergency surgery. I was devastated. I had no idea what a stenosis was, or even if I was going to survive.

The balloon dilatation went well, but unfortunately my airway would close again rapidly over a few weeks I would need more surgery.

I’ve since been on successful treatments for the vascuitis, and my airway has stayed pretty clear until recently.

The surgeries are fine now as I’m used to them, and I know they bring me a lot of relief afterwards.

Date: August 26th, 2013 | Categories: Patient's Experiences | By: | Comments: 2

2 Responses to Gwen’s Story

    Good morning, it was a relief to read your story Gwen. I was misdiagnosed for over 2 years & had never heard of subglottic stenosis. I have to go to the city 5 hours away for the balloon expansions every 6 – 9 months. My local doctor has never seen anyone with the condition.
    The cough is very frustrating as my airways get narrower & wondered if you had a problem with this & if you had found anything that gave relief.
    At present I am waiting for another treatment & manage a normal life by pacing myself


    Hi Faye – I can relate to the cough! I used to cough so much, that is practically gave me a six pack and I did no exercise! Hope your breathing is getting better x

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