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Severe asthma resources

Hi all, while I’ve been recovering, it has been tremendously comforting to read about endeavors to expand awareness, research, understanding and care for those diagnosed with severe asthma. Reading about the impact of severe asthma from patients and seeing on paper that they experienced many of the same emotions/worries I have struggled with over the last 8 months made me feel less alone and fearful.

As I find them, I’ll share some of the patient studies and documents on our type of asthma, its impact and our rights and what we should expect from our care teams. 

click the patient charter to read the article and basic rights we should expect in our care

Click to read the severe asthma Canada – the patient journey 

AAFA my life with asthma, 2017 survey of 800 Americans living with severe asthma and the challenges they face

 

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Comments 14

  • K8sMom2002

    Em, I love the way you pay it forward! Which of these resources has been the most eye-opening? Which has made you feel less alone?

  • Emelina

    Thanks Melissa and Cynthia. The severe asthma Canada was the most eye opening in terms of the hardships facing those with severe asthma (access to care, getting the right diagnosis, frustrations with care, knowledge of treatment options). They did a good job of mixing in patient stories which brought comfort – I read their words and thought, hey that sounds like me. 

    The aafa’s my Life with asthma brought the most comfort. I loved their word clouds and easy to read graphs. Reading through the emotions, impact on their life and consequences of asthma really resonated with me. It made me feel less like the only person in the world with asthma who was abnormal in feeling sad, angry, frustrated, scared and alone during the hardest days. It also highlighted the non medical impact on family, work, life.

    Our disease is tough, but it helps to know others have been there, there is hope and with patience and good support, it is a diagnosis that can be reigned in and life goes on. 

  • K8sMom2002
    Emelina posted:

    It made me feel less like the only person in the world with asthma who was abnormal in feeling sad, angry, frustrated, scared and alone during the hardest days. It also highlighted the non medical impact on family, work, life.

    Our disease is tough, but it helps to know others have been there, there is hope and with patience and good support, it is a diagnosis that can be reigned in and life goes on. 

    You are most definitely NOT alone! And with so many people with asthma, there is much interest in research … I feel like we are on the brink of great discoveries that will change the way we view, treat and experience asthma.

  • Emelina

    Cynthia, I love your positive spin. I think you are right. I can’t wait to see what the next 25-50 years brings to asthma care. 

    Here is a document from the commonwealth fund. It was a survey of 1500 people in the US living with serious illness (2 or more hospital stays or more than 3 doctors). I liked their use of statistics to frame a discussion of what living with chronic serious illness is like (financial hardships, social isolation, psychological impact) and what their hopes are for the future to improve care. 

  • Jenny1480

    I'm new to this site and when I saw severe asthma I instantly went to it I feel so alone sometimes because I feel like unless you have experienced it then you really don't know how it feels. I was diagnosed with asthma when I was 12 years old ages 12 to the age of 35 never even had to carry an inhaler then in an instant my whole world changed and it was extremely difficult for me at first to deal with just feeling of not being able to breathe and being scared to death of it happening again to me losing all my friends because they would think that I was using it as an excuse to break plans then they would say things like well you should be used to it by now for example my family stopped coming to see me in the hospital I was in the ICU and I broke down in tears because she never realized how alone I was and couldn't believe my family didn't at least visit sometimes being in the hospital  for weeks at a time in the hospital for weeks at a time always bothers me until she said something like how it was not right and how it broke her heart I just seen people have their own lives I don't want to bring anybody with having to go to see me in the hospital but I did ask my sister that fight why is it that you guys never visit me or call me to make sure I'm okay my sister said you're always in the hospital and it hit me like a ton of bricks basically she was saying to me it's a burden to us to have to go there to see you I think that is the worst my family made me feel ever my life I felt like because I was a burden to them so much that it didn't matter what happened to me I went from living a normal life to one day being rushed to the hospital waking up in the ICU on a ventilator learning that they had to do chest compressions my heart stopped because of asthma attack it just kept getting worse from there for the past 3 years I spent every single holiday every birthday every Mother's Day in the hospital with the exception of my Mother's Day I spend more time in the hospital and ICU this than I did at home gaining so much weight having a total hip replacement at age of 39 because of the steroids I have to take everyday I've been on Prednisone for over 3 years straight now everytime I get to about 20 mg of a taper I'm rushed to the hospital with an asthma attack I had to get a port put in my chest because the steroids destroyed my veins and they couldn't give me meds to save me anymore so basically I'll die without it to now my newest edition to my list of things that have happen since that day everything just changed is well my throat decides it wants to get in on the action and decides it really be a drama queen and just closes out of the blue no reason just one day I could not breathe my throat completely closed and please put on a respirator in CPR me the time I woke up in the ICU still on the ventilator and it was scary even for me so should be used to it according to my friends and family I am 39 years old I have a 19 year old son and I have to have my son babysit me how degrading is that as a mother to hear my son say no I can't go out with guys they are his cousins because he have to stay home with me I'm not allowed to be alone anymore in case my throat closes again the first time it happened was in January and it has happened about 20 times since then so nice or severe asthma I had to read it because I felt like it would be other people that could relate it's hard being 39 years old working and contributing member of society to being on Social Security struggling each month to survive on $700 a month and sometimes having to choose between medication and food I I forgot to mention 6 weeks ago all of a sudden I am having severe reactions to perfume now I can't even go to a store I basically live in a bubble at home I'm a very sociable person I'm a huge people person  and my mom always said I had the gift to grab I was hoping maybe for some advice and would love to maybe even be able to help someone too with something I've been through  that is just new for them they are scared and looking for someone to say it will be ok and sorry this is such a long comment I hope it's ok  I guess I should have said I'm pouring my heart out I've added a four-wheel if it is approved I just wanted to show that I will not allow this to you completely change who I am and if I not lost and I am feeling up to it hi oh and make sure I have a good time this was that New Year's Eve I decided you know what I'm going to get sick anyways might as well have fun getting somebody else's germs that put me in the hospital and happening at the grocery store he was such an amazing night ihaven't had that much fun in years thank you for everyone that  actually read this entire comment I really appreciate it 

  • Emelina

    Hi Jenny,

    welcome! Nice to meet you. Maybe one of the moderators can help us fork out what your wrote so you can meet more of our community. You are definitely not alone, though it may feel like it. I struggled with feeling alone and isolated until I found this community. 

    What you describe sounds terrifying and I’m sorry your family has not been there for you. No one should have to wake up in the ICU on a ventilator after an arrest and be alone or told it’s a burden to come see you.  

    a few questions: 

    – it sounds like your Asthma is still very much out of control. Do you have a pulmonologist that feels comfortable with your severity of asthma? I was just wondering if you live somewhere close to one of the bigger centers where you could get enrolled in a severe asthma registry, trial or even talk to someone about other options. 

    – that is tough needing your son to help care for you. Do you have a life alert button? Sometimes insurance can help pay for this given your severe asthma and throat issues and multiple life threatening events 

    – hang in there. Please know that you aren’t alone and I’m glad you found us. There are many folks here who struggle with severe difficult to control lung disease. There is always hope for a better tomorrow. 

    Best em

  • Shea

    Jenny, I am so sorry you have had to go through such huge health issues, and so much without your family (with the exception of your son). I am also young relatively speaking (age 34 now) and have been strugglingvwith different health issues since age 12, and am a sungle mom (my son is 7). In 2012 I was diagnised with a rare chronuc allergic disease called Churg-Strauss Syndrone which involves lungs (asthma), blood vessels (vasculitis), heart (had a heart attack from allergic eosinophils choking my heart and now have Arterial Fibrillation), skin, and other organs. I too find balance at 20mg prednisone and have been stuck there for the past 7 years, dealing with steady weight gain, osteopenia, trying to find ways to reduce the side effects. I also live on disability. 

    The difference is my family has helped me soooo much. So it really makes me sad and mad to hear you have been doing so much of this alone. When a person is ill, those in the family that are healthy should be taking on more and helping. When they get sick and old one day they will need someone too so they need to figure out fast what the right thing to do is and start righting themselves! (Or be ready to face those roads alone too one day if they think how they are treating you is right!) Most cultures and families, even animal ones, care for their sick. My family helps me when I am ill by visiting in the hospital, by offering financial help, by helping my son and being with him to offer emotional support– just being by there and doung what they can! I hope your family wakes up!

    No one gets anywhere alone. You didnt get sick alone. It isn't your fault.

    We have a great community here online, and check in with eachother a lot on the daily roll call thread. I have found this group to be such a great support for me because even with family, they dont always understand and I am limited to what I can do socially, so this has helped me socially because the people on this forum are so caring and wonderful, we share the tough times and the good times, we vent and we try to find humor. I hope you keep posting here and that things start taking a turn for the better for you! One of the things I like to do during rough times is try to focus on one thing I can do wuth my illness that I like. The other thing that helps me is making a vision board collage of things I want to bring into my life. Are there any things you like to do that help in stressful times? (I am sure you have a bunch because you've made it through some very tough times!)

  • Melissa G

    Jennifer, 

    I forked your reply into a new topic so you can get more responses. 

    You can find it here:

  • Emelina

    Found these illustrations in asthma.net’s summary of results from their asthma in America 2018 survey. They definitely capture some of the challenges of living with this disease everyday.

  • LK

    Em,  You've been busy!  In a good way!    

    All those illustrations are so accurate!!  Wow!  Thanks for posting them.

  • Emelina

    Thanks Lisa and Melissa, I liked them because they captured the “everything else” of asthma. It’s more than just an inhaler prescription. The theme for last year was “more than just asthma.” 

    I was thinking about sharing them on my Facebook as part of the May asthma awareness. Not for pity or woe is me, but to show others that asthma is hard and touches all aspects of our lives, and maybe beget kindness the next time they see someone with asthma struggling … or even flourishing. I don’t see us as “diseased” or “weak” … I see us as warriors and survivors. Despite all of these symptoms and effects, we are still here and still kicking! 

  • Melissa G
    Emelina posted:

     I was thinking about sharing them on my Facebook as part of the May asthma awareness. Not for pity or woe is me, but to show others that asthma is hard and touches all aspects of our lives, and maybe beget kindness the next time they see someone with asthma struggling … or even flourishing. I don’t see us as “diseased” or “weak” … I see us as warriors and survivors. Despite all of these symptoms and effects, we are still here and still kicking! 

    I think that is a great idea! 

    We are more than our diagnoses! You have such way with words Em!