Has anything really changed in the asthma landscape since World Asthma Day 2022?
For the day to day living with asthma really not much has changed. The same frustrations are still there and sadly I think they will continue for many years.
The has obviously been some positive changes especially with the approval of the new biologic from Astra Zeneca called Tezelepumab brand name Tezpire. This biologic will mean a wider group of people with severe asthma are eligible for it as it does not have the same tight criteria to be approved.
For me personally there are some key issues that need to be addressed or understood better. Over the course of May Asthma and Allergy Awareness Month I am going to look at each in more detail:
- What is severe asthma
- When does asthma become severe asthma
- Confusion around the name severe asthma
- The MDT needed to manage severe asthma
- Advocating for ourselves when we advocate for the severe asthma/asthma community
- Understanding of why medication needs to be taken
- Asthmatics taking responsibility for their own disease
- Funding
I am very lucky in that I have had some fantastic opportunities because of my severe asthma over the last year. While the year has challenged me in ways I would never have thought I have been able to continue doing some of the work I love. Being able to highlight how awful severe asthma is a large part of what I do but my advocacy has evolved because I found always talking about the negative can sometimes be very draining. I am reliving what I cant do constantly rather than focusing on what I can do or where I see that there are gaps in care.
Being able to speak to people about where things can be improved is so rewarding and then to see your ideas come to fruition. My dream is to be able to put together a handbook for living with severe asthma that not only focuses on what severe asthma is but the different aspects involved in getting the most out of your treatment, ways to speak to employers, benefits, nutrition and pacing yourself among other things. I want it to be all the information you get through living with severe asthma- which have often been through trial and error, and also answer the questions that you cant ask in the clinic environment .
One part of this dream happened during the last year and that was to start a virtual severe asthma peer support group. The group has been going for the past 6 months and meets tonight on zoom. The purpose of a peer support group is to connect people with severe asthma as it is a very lonely and isolating condition, it is also to offer a safe space for people with severe asthma to unload their worries or difficulties they are having with their severe asthma, a chance to learn from each other about the tips and tricks we use for everyday living and also to have guest speakers come in and speak to the group about various things that will benefit them such as adrenal insufficiency. The response I have had from people who have attended the group has been amazing. I don’t know what I was expecting from it other than to try and help someone feel less lonely while they live with severe asthma.
I long for the day when you can live a very healthy life with severe asthma, that severe asthma is not such a limiting condition. The term asthma remission is a bit of a buzz word just now but I am unsure of how successful this will unless there are fundamental changes in asthma diagnosis, management and attitude to asthma.
Perhaps for World Asthma Day 2024 I will be able to say that we have cracked the asthma code and we are now winning the battle with asthma meaning people are having far better outcomes with their asthma and it is not interfering with their life. Until then I shall try and continue to raise awareness of the disease and help make a change.
Fingers crossed!
ANONYMOUS-ASTHMA 