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What information does a person need when they are first diagnosed with asthma?

Hi,

We're developing a new program for people newly diagnosed with asthma and would like to involve people living with asthma in the development of the content and program.

We'd love to hear your insights.

  • What information helped you the most when you were first diagnosed with asthma?
  • What information could have helped you, that maybe you didn't receive, when you were first diagnosed?

Thank you for sharing your valuable feedback – we are open to receiving any comments. We hope that with your help, we can assist people with their adjustment to their new diagnosis and help them better manage their asthma.

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Comments 7

  • K8sMom2002

    I was diagnosed as an adult, and it would have been helpful for me if the doctor had explained better that my asthma wasn't something that would "go away." I thought, the way he explained it to me, that adult asthma was different than asthma in kids. I thought it was a temporary complication of my bronchitis. 

    Because I didn't understand that, I didn't always carry my inhaler with me. 

    The thing that helped me the most was the way my pharmacist took the time to actually show me how to use a spacer and my inhaler. 

  • Mandy

    I was diagnosed in adulthood as well. So education for healthcare professionals on this would be beneficial. Something my Respirologist has always done is to show me how to use my meds and that has been so helpful. I think explaining the different types of asthma is important too. Asking the question, where do I fit in on this spectrum is always helpful. I never knew where I fit in until I became severe and refractory. I thought, like many others, I had "just asthma" but anything uncontrolled is dangerous. I also wish I would have known the implications of being uncontrolled during pregnancy and the importance of having a Respirologist manage and treat during pregnancy. 

    Things I wish I would have known? The non pharmacological interventions that may be helpful for some, keeping a trigger/symptom diary, an updated asthma action plan and the psychological aspect of living with a chronic disease and where to find support. I have created my own team (Respirologist, Psychologist, GP, Pharmacists, massage therapist, physiotherapist and natural path) and my Respirologist is aware of every move I make. Which I feel is so important whom ever the primary care giver is (specialist, gp,or nurse practitioner). I also wish there was more information on living with Severe Asthma. 

  • K8sMom2002

    Mandy, I've never thought about having to treat asthma during pregnancy. I can't have biological kids, so it was never anything I had to juggle.

    It can't have been an easy time for you — balancing pregnancy with uncontrolled asthma. That had to be incredibly difficult and frustrating and scary. Were you able to see a respirologist while you were pregnant?

    And on creating a good, solid team! That's the way to tackle asthma! It takes a team, that's for sure!

  • Kathy P

    Pregnancy is when my asthma really came to light too. I was really freaked out at the idea of taking all these "extra" meds. My doc assured me that breathing took precedence If I wasn't breathing properly, the baby was not either.

    That's a great list Mandy!

  • Mandy

    I saw a Respirologist with my first pregnancy but was fine after so I never saw him again. In my second pregnancy, I was exacerbated to the point where they needed to induce me thats when I met my doctor now. I begged him to take me on and thank God everyday that he did! I promised myself I would never let my asthma get that bad again. There was so much pressure on my lungs from the baby and the size of my lungs felt no bigger than my fists. I cough a lot but with that pregnancy I couldn't go very long without having attacks.

    I have been an obstetrics nurse for 13 years and I had never seen someone be so affected. Now I know I guess I have to learn things the hard way but I just kept thinking it's not that bad…it'll get better.