Last September I started the Severe Asthma Peer Support Group with the support of Asthma + Lung UK. Unfortunately this has not worked out so I am now running the group independently from Asthma + Lung UK. It was not an easy decision to make, and I had many sleepless nights thinking about what I… Continue reading Severe Asthma Peer Support Group
Tag: severe asthma
What is severe asthma really??
And what does severe asthma look like? Does having severe asthma look like this? Is this what severe asthma looks like? In all the photos above I have severe asthma (some of them are a lot older than others). In the top photos it doesn't look like there is anything wrong with me but the… Continue reading What is severe asthma really??
World Asthma Day 2023
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… Continue reading World Asthma Day 2023
A year on Omalizumab
I cant believe that it has been a year since I had my first injection of omalizumab also known as Xolair. I am on xolair for spontaneous idiopathic urticaria (hives) and angioedema (swelling), it also benefits my asthma as well although the dose I am on is higher than what I would be taking if… Continue reading A year on Omalizumab
Medic Alert- my security blanket
When it comes to my health I have a few security blankets one being my inhalers and the second my medic alert bracelet. When you live with a condition that can render you speechless it is a huge fear that I won't be able to tell anyone what is wrong with me if I need… Continue reading Medic Alert- my security blanket
Lung Health Lottery
Today Asthma + Lung Uk launched their campaign End the Lung Health Lottery. They have collected data which has been analysed and the results are shocking. Depending on where you live in the UK will depend on your lung health outcomes. If you live in an area of higher deprivation the higher the chance that… Continue reading Lung Health Lottery
Floundering a little
Just now I feel like a swan in a pond. Everything looks ok on the outside but under the water it can be furiously paddling to stay a float. In January 2022 when I developed the urachal cyst never did I envision what has unfolded let alone still be battling 14 months later. I am… Continue reading Floundering a little
Speaking at Lung Health Cross Party Group
Today I had the opportunity to speak at the Scottish Parliament Lung Health Cross Party Group Meeting. I was invited to speak about the formation of the severe asthma peer support group and what it will do for people with severe asthma. I never normally get too worked up or nervous about speaking but today… Continue reading Speaking at Lung Health Cross Party Group
Setting up a virtual severe asthma peer support group
For a long time I have wanted to set up a severe asthma peer support group because the condition is so isolating and very difficult to live with. We often have to use our own knowledge of the condition to help ourselves manage it because the medical knowledge of experts is limited to the science… Continue reading Setting up a virtual severe asthma peer support group
2022 is not my year
Last year (2021) I had so many plans for this year especially as my health seemed to be a bit more stable I was looking forward to getting out and about and just living life again but 2 weeks in January that all changed. I cannot believe we are now in October. Time has been… Continue reading 2022 is not my year