Mapping The Road For Asthma Advocacy
This fall I have found a renewed energy for asthma advocacy. I guess I am a bit fired up from a month of having some invigorating chats and planning sessions with some great peeps and discussing all the possibilities of being a healthcare rebel.
How can we support and advocate for each other?
How as an asthma community can we support each other and advocate for what we need as patients and as patient community?
While I am fired up, I have been searching for the best area to focus on. What areas of your asthma do you think needed attention. It is amazing how we change these goals from necessity and need, to wanting to create better communities.
It is amazing how our asthma journey takes us on such adventures.
My asthma advocacy journey
My advocacy journey really started with wanting to create more awareness that there are different types of asthma and the understanding that some asthmatics may have uncontrolled asthma despite their best efforts. I always come back to the time that I felt lonely and isolated in my diagnosis and in what felt like a repeated treatment failures. If I could set an advocacy goal, it would be to create an awareness campaign or a method for advocating for resources for continued research on asthma phenotypes and the impacts of severe asthma. In particular, to find a little bit of courage to find better ways of communicating with my care team and finding my voice as an advocate.
I am also passionate about patient rights and giving patients the courage to follow their guts as advocates and co-designers of their own care. I would love to change the way that conversations with patients are approaches. I was in a waiting room yesterday and while I was a bit foggy from a couple of tests, fasting, Ventolin rushes from post-spirometry, I was still a bit nervous for my chat with the doctor. I know this fellow well so we had a good recap of how I have been doing, reviewing my ACQ, score and I have a good relationship with him. However, we have not always had that and I always feel like I need to be engaged and address my validity as being the patient in the room. What if we designed way of always approaching these meetings from a place of mutual respect? My appointment ended up being fine and while some the our discussions, didn’t exactly yield the results that I was hoping form. We are making medication changes but not quite the one I was hoping. I guess I want know how it goes, until I try it.
It is important to know that individuals are different when it comes to responses to treatment, exacerbations, etc. The CDC indicates that 38.4% of children and 50% of adults with current asthma have HAD uncontrolled asthma.1 I find this statistics startling and a bit mind blowing but it falls in line with the heterogeneity of asthma and individual responses.
I am a research groupie. I know that it is important that patients actively participate in research and advocate for continued research. The reality is that, while many people are controlled there is a population that is not despite all the
Have you ever gotten "moon face" as a side effect of prednisone?