The face behind the Anonymous Asthma blog.
A brief story about my asthma so far!
I count myself as lucky- I have never known what it is like to breathe normally, not have a collection of inhalers (nebulisers, sprays, pills and potions) to try and keep my airways open enough to let me breathe.
I am at the stage now that we don’t actually have a clinical name for my asthma hence the title of my blog “anonymous asthma”.
As a young kid I was diagnosed with asthma and that was it. As I got older I was needing more and more medication, hospital admissions started and my asthma began to impact my life.
I knew my asthma was fairly severe and not very well controlled despite our best efforts but in 2005 things took a huge turn for the worse. Up till that point I did not think asthma could get much worse but I was wrong. In comparison I would say my asthma was really not too bad before.
I got a really rare type of pneumonia while in Canada which ravaged my lungs to the point I have not been off oral prednisolone since then. I think it was a type of walking pneumonia as I didnt realise how sick I was until my body just couldn’t cope.
(This photo was taken just hours before I was rushed to hospital and my life changed forever)
Since 2005 my asthma has just continued to decline and dictate a lot more of my life. I feel like I have been on just about every medication there is to try. Hospital admissions have become normal. Going to intensive care no longer fills me with fear as every admission just about requires HDU or ITU.
Now that my asthma has taken over my life and prevented me from living the life I would like to, I have developed a passion for raising the profile of asthma and make people see that it is not “just” asthma but actually a debilitating killer disease.
I now spend my spend my time being a severe asthma advocate, raising awareness, fundraising, public speaking and being involved in research either as a co-applicant, patient advisory group member, reviewer or one of the many other roles a patient/lay person can take on in the research process.
I am so fortunate to be a member of many groups and had a huge number of opportunities to use my experience of living with debilitating asthma to help others wether that be policy makers, researchers, medical professionals, industry partners or other people who have or are affected by asthma.
- Patient and Public Involvement (PPI) lead at Asthma UK Centre for Applied Research
- SPEAK Asthma (Children & Young Persons Group AUKCAR) co-facilitator
- Astra Zeneca Patient Partnership Program
- TEVA LifeEffects contributor
- Patient Engagement Group member Chief Scientist Office Scotland
- Edinburgh Clinical Research Facility Patient Advisory Group
- Intensive Care PPI Group Edinburgh
- Asthma UK Research and Policy Volunteer
- Lung Health Cross Party Group Member (patient), Scottish Government
- Scottish Patient Advisory Panel, British Lung Foundation- Asthma UK Partnership