an insight into my life with severe asthma, advocacy, awareness & research
Life always comes full circle. The reason for starting this blog almost 20 years ago was because I was frustrated with how little was known about severe asthma and how misunderstood the condition was (also a little bit of a pity party). I was also upset and angry because it felt like everything I ever… Continue reading This will be the last post from me here
3 and a half years ago I set out to set up a peer support group for people living with severe asthma having had experience of peer support, facilitating and running groups with ICUsteps. I held the first meeting in September 2022 and now the last meeting has been held as I call time on… Continue reading Time is Called on the Severe Asthma Peer Support Group
"Asthma Remission" seems to be a bit of a buzz word just now in both the clinical and academic worlds. It feels like this is the new focus as for years it was "curing asthma". That cure remains elusive so is remission the next best thing. I straddle a few different parts of the asthma… Continue reading Asthma Remission
As I write this on the plane home from Madeira I am feeling a huge mix of emotions (I wrote this yesterday on the plane). The pride of representing Great Britain at the first ever European Para Laser Run Championships, frustration at my race being interrupted before it even started with smoke hitting my lungs,… Continue reading Competing for Great Britain at the European Para Laser Run Championships
Accessing biologic medication Criteria/ Eligibility for biologic medication Subjective versus Objective criteria Staying on a biologic medication long term I recently gave a talk to some 3rd year Biomedical Science students for their Drug Discovery module at Imperial College London about my experience of living with severe asthma and the various medications I have been… Continue reading Accessibility to biologics in the UK
Every year more people are diagnosed with asthma but more often than not they get no education about the (sometimes) very complex condition and how best to manage it. This years topic for World Asthma Day is Asthma Education Empowers. I often find that people think because I have had asthma for over 35 years… Continue reading World Asthma Day 2024: Asthma Education Empowers
As we approach the first anniversary/ birthday of Edinburgh Giants Inclusive Sports Club I think how much has changed for me but also very aware of how close I was to not going. Before my first taster session with Edinburgh Giants Wheelchair Rugby League I was sitting trying to convince myself to get in my… Continue reading 365 days of finding myself again
Today marks 7 years since I was down in London at the launch event of Healthcare Heroes- a collection of people who have made a positive impact through their work. I was invited and my story told because of the work I had been doing as a patient advocate for the severe asthma community. This to… Continue reading New Horizons
A fellow patient advocate that I follow on social media put up a very profound post yesterday that resonated with me so much. It said how you "can be in a room full of people and still feel lonely". It hit me so hard reading this as it is often exactly how I feel. I… Continue reading Feeling lonely in a room full of people
I have never been very good at resting or recognising when I need to rest. This has been really prominent in my sporting life and I think it comes with having chronic life threatening illnesses because you don't know when your last time being involved in something will be. I used to go to every… Continue reading Recognising when it is ok to rest.
ANONYMOUS-ASTHMA 