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Monday, April 22, 2019

I am not "asthmatic"

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So, everyone with asthma is different and sees things in a different light.

My pet peeve? Being called "asthmatic."


Because I'm so much more than someone with asthma!

That is not my label.

I'm also a career woman, mom, and friend with wrinkles and streaks of grey hair. And yet none of that defines me either. 

My 3 kids also have asthma, but it isn't their label either. Nor is being college students, having allergies, blue or green eyes, and straight or curly hair. None of that defines who they are.

With medical conditions (or even disabilities), the shift for the last 20 years has been to use People First Language.  

"People First Language is an objective and respectful way to speak about people with disabilities by emphasizing the person first, rather than the disability. It acknowledges what a person has, and recognizes that a person is not the disability. In putting the person before the disability, People First Language highlights a person's value, individuality and capabilities."

You put the person first, then the medical condition or disability. For example:

  • Instead of "asthmatic", you would say "I have asthma"
  • Instead of "diabetic", you would say, "My sister has diabetes."
  • Instead of "autistic", you would say, "My nephew has autism." 
Not so hard, is it?  

I work closely with our state health department and was told 10 years ago to NEVER use the term "asthmatic". 

Shortly after that, I was part of a grant. As I was advising the researchers, I explained People First Language and suggested they not use the term "asthmatic, " but they still did.

Fast forward several years, and they want to publish their results in a medical journal. But, it wasn't accepted because there were several changes that needed to be made, including removing any time they used the term "asthmatic" and replacing it with "child with asthma."  

Even highly respected medical journals won't label people. 

So, just something to think about the next time you are going to use the term "asthmatic." Stop and think if it will label someone. Or if there is more to someone than having asthma?

Monday, April 8, 2019

Blacks hit hard with asthma - why?

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I'm always reading new research about asthma. I am so glad I can learn from these smart people!

In the article, they say that "15.3% of black children have asthma, compared to 7.1% of white children........ African American children are also almost 3 times as likely to die from asthma as white people."

A researcher in Boston (Dr. Esteban Burchard) was studying asthma when he said: 

“a black teenager died of an asthma attack right outside the hospital entrance. Which is ridiculous. There are 20 hospitals in Boston!”

Now in California, Dr. Burchard and a team of 50 researchers published a paper explaining their findings.

"A set of genetic mutations found mostly in people of African ancestry may make them less likely to respond to albuterol, the most-prescribed asthma drug in the world."
The article mentions other things that contribute to asthma - stress, environmental exposures  and even social forces such as racism and poverty.  

So, how to find those that are resistant to Albuterol? Researchers are collecting and studying DNA to find those with the NFKB1 gene. That gene is related to smooth muscle response in the lungs. Albuterol usually works by helping to release the constriction of the smooth muscles.

So, my question after reading the article is - if you have the NFKB1 gene, and Albuterol doesn't work, what else is there?

Ipratropium (brand name is Atrovent) could be another option, but it doesn't mention that in the article. 

I'm looking forward to learning more from their research!


Monday, April 1, 2019

Bad memories from asthma

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Last night we were having Sunday Dinner with our college kids. Middle Son decided he wanted to (gasp!) watch a movie with us. 

He pulled out Lord of the Rings and mentioned that he hasn't been able to watch it for the last 10 years. He said it brought back bad memories of being in the hospital when he was younger and then being stuck home afterwards to recuperate. 

As a teenager, Lord of the Rings was one of his favorite videos. And there are 3 looooong videos, so he could just rest and let his lungs recover while he vegged in front of the TV.

Many teenagers might think, "That's Dope! I wanna stay home and watch videos all week."

Yeah, have to be REALLY sick to go to the hospital in the first place. And the recovery isn't much fun either.

This is what I saw with my kids after being in the hospital:

They are weak. 

Their chest hurts from coughing.  

They cough so hard they throw up.

They have to sleep propped upright on the cough because it's easier to breathe.

Oral steroids make them hungry and mean (and keeps them awake.)

They can't go too far because they run out of tubing with their oxygen concentrator.

 Everybody is outside on bikes or scooters, and they just get to watch from the window.

It's always time for another breathing treatment, steroid pill or antibiotic. 

Their friends have to bring home their homework because the teacher doesn't want them to fall behind.

I could go on and on about how hard the recovery is.

So, if my son wants to watch Lord of the Rings - you betcha! You want ice cream for lunch? Okay! 

What bad memories do your kids have of being in the hospital? Are they re-setting bad memories by embracing things now that remind them of the hospital?