Hiya, this is my first time on Asthma UK! I just really wanted to share my story with you all, as there are probably many other people out there who were in the same situation as me.
I'm 17 years old, and had a little bit of allergy asthma when I was about 5, but nothing serious. Up until last September, I have had little bother with my asthma, just the odd brown inhaler when I got a cold. In every other respect I was considered extremely healthy. However, this all changed in September last year when I was being kept up all night coughing, and having bouts of being completely unable to breathe. When i went to the doctors first time, they said the classic 'no wheeze, no asthma' and got sent home feeling like he thought I was making it all up. It wasn't until I was admitted to hospital in December with severe breathing difficulties, and quite horrendous blood gases that I was taken seriously. I was in hospital for a week, and was started on seretide 250 and had a ventolin inhaler.
Things didn't improve after that. By the end of February I had 5 emergency admissions, 3 of which were to intensive care. This wasn't prevented even with being on prednisolone 30mg a day, seretide 250, flixotide 250, singulair 10mg, regular salamol nebs. I was pretty much a mystery to the medical profession as why this had come so out of the blue. I was diagnosed as having brittle asthma. This was such a shock for me, as I had no idea what my future would hold for me, I had just got a place at medical school which had been my dream for so many years.
The breakthrough came on my 6th admission, where my consultant said I must immediately be transferred to Heartlands hospital, where they have a severe and brittle asthma unit. I think it was really noble of him to actually admit he had no idea what had caused it and wanted me to see someone more experienced. When I was there they told me to go cold turkey on my medications and nothing happened..... Just like when I was taking the medication, there had been zero improvement.
This baffled them alot, but then my consultant there, who runs the SBAU, sent me for an endoscopy. It was then that they diagnosed me with VCD- vocal cord dysfunction. They are one of the only units in Britain that specialises in it. The thing about vocal cord dysfunction is that it completely mimics asthma, and can feel like your suffocating, and doctors panic thinking your having a huge asthma attack, hence giving you loads of medication that you don't need, that in turn harms you. Also, you don't respond to asthma medication, which makes doctors who don't know about VCD think that your asthma is simply very brittle. There was a lady on my ward who had been diagnosed with brittle asthma 30 years ago , had been on every medication available, including long term predisolone. She had just found out, after 30 years of being unable to work, that she had VCD, and in fact no asthma whatsoever. The really sad thing for her is that VCD can be treated and controlled by breathing techniques alone for a lot of people and no medication is needed. And the problems she now had alongside the VCD were because of all the medication they had pumped into her she didn't need. About 25% of people with VCD have asthma also, but also around 10% of severe/brittle asthmatics are actually misdiagnosed, when they really have VCD.I felt so grateful mine had been caught this early.
I guess the point of this message, is if anyone out there has severe asthma, attacks that come on very suddenly, that doesn't respond to the treatment, annoy your doctor about this VCD thing. It's definitely saved my life, if I hadn't gone to Birmingham, I would have been continued on these debilitating steroids that I didn't even need.
Lucy
Guidance for colleagues - brittle asthma
Accepting severe brittle asthma?!
Brittle asthmatic struggling
Brittle asthma
