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Monday, January 29, 2018

Yeah, I know everything about asthma, you can't help me

(shutterstock image)

Every time I hear someone say (or act like) they know everything there is to know about asthma, I just want to do a face palm.

This isn't a competition to see who knows more about asthma!

NO ONE knows everything there is to know about asthma. There are a myriad of people who work with asthma - researchers, doctors, asthma specialists, health educators, parents of kids with asthma, people with asthma. 

We all come from different backgrounds and have different experiences.

I LOVE the work researchers do! They find new medications, develop new asthma tracking apps, experiment with environmental interventions. etc. Do they know everything about asthma? No - because many of them don't actually LIVE with the disease! But some researchers ask patients to help guide their research based on their experiences (with asthma, diabetes, cancer, etc.) PCORI is one example of an organization that funds research guided by the patients!  

I love my doctors too - but many of them don't have asthma either. And if Asthma Doc is out of town, I may have to go to my Primary Care Doc. He doesn't specialize in asthma or understand what it's like to live with asthma, but he can follow the NAEPP guidelines for asthma control. That helps him to know what medications to prescribe and when to change them based on a patient's control or severity. 

Health Educators can provide what the doctors and nurses don't have time to do - asthma education. But it may be hard for them to really "get it" if they don't live with asthma and have never had an asthma attack.  

Parents of kids with asthma really have their hands full, managing each kids' symptoms and prescriptions. As the mom of 3 grown kids with asthma, I spent my fair share of time at Asthma Doc's office, the Pediatrician's office, After Hours offices, Emergency Room and in the hospital. But, since I have asthma, I knew EXACTLY what they were feeling and how to help them.

There are people who have asthma but don't have allergies. So they can have dogs, cats, and a yard full of flowers. Wow! How would that be? IF someone's dog walks up to me, (and even if I don't pet it), I will start sneezing and have my chest tighten up.

Those of us with asthma AND allergies have a very different viewpoint of asthma. Especially when you are allergic to so many different things - that can all set off an asthma attack. Some of us take allergy medicine every day, some of us have years worth of allergy shots. Some do both.

Some parents have never had to deal with a kid with asthma being hospitalized (lucky!) My kids were hospitalized 12 times for asthma (2 ICU). I was usually sitting at their bedside, coughing right along with them, because when they got pneumonia, I got pneumonia. 

Some people with asthma only have to use their Albuterol (rescue inhaler) a couple of times a year. Wow....really? How would that be? I use mine once or twice a week (and I already take a daily controller inhaler.)

Some people with asthma have never had to use a biologic. Biologics are medications given by injection for those whose asthma can't be controlled with traditional treatment programs. My son started on the first biologic back in 2008 and had monthly injections for 7 years!
Do any of these people know more than someone else? No - because we all experience asthma differently.

Even if you think you know everything, you can always learn more!

I watch webinars every month from Allergy & Asthma Network.   

I watch asthma webinars from various state health department Asthma Programs, the EPA and CDC. 

I attend national asthma education conferences every year.

I read about new research in medical journals (they're really not that bad once you get used to them!)

How do you stay up to date?

Asthma is always changing, and if someone wants to share something with you, you can politely listen. If  it's new info, great! If if something you already know, that's okay - they were trying to help.

Remember that we all come from different backgrounds and experiences and asthma is different for everyone. It's not a competition of who knows more, it's a collaboration to learn and share!


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