My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did not think i had asthma, but i was constantly dismissed. I even took family members to my doctors appt to back me up, but to no avail. I looked up tracheal stenosis up on google in the end, and thought I might have that - BUT STILL, my consultant said I had asthma.
My doctors even refused to believe I was having a flare up of Wegeners, and I was left untreated until 2006!!!!
Eventually, in 2005, when I became pregnant - my breathing difficulties got so severe, that I was admitted to hospital. It was actually an anaethatist who listened to my chest and said 'that's not asthma' and within hours, I was having emergency surgery to save me and my baby's life, who was born prematurely as a result.
I was so devestated and angry by the time i was correctly diagnosed, that i took the decision to take legal action for negligence against the hospital - for which i subsequently won the case, at the high court in london.
I really hope that increased awareness about Wegeners stops that kind of thing happening to anyone else xx
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