Welcome to the May update from Breathing Better Living Well!

Man walking in snow with umbrellaThis month we’re going to shake it up a bit and talk about looking at things in a different way. We’re going to look at lung disease and what causes it – differently than we often do – and differently than even many doctors do. You know, sometimes just because we’ve always done something a certain way, it doesn’t mean it’s the best way. Why, just look at this guy. If it’s snowing, you can stay dry by using an umbrella. And if you have COPD, you might take a look at your genes. No, not those jeans! Your other genes. Ummm.. Maybe I can say that better. Here we go…

It’s easy to say that smoking causes lung disease (and no doubt about it, it does!), and to blame it all on the smoking and forget about everything else. But, it might come as a surprise to learn that there is actually an inherited form of COPD. It’s called Alpha-1 and its much more common than you’d think.

Alpha what? Well, Alpha-1 (short for Alpha-1 Antitrypsin Deficiency) is when a person inherits two genes, one from mom and one from dad, to cause the lungs to miss out on the protection they need to fight off the effects of all the things we may come in contact with every day – things like pollution, dust, fumes, infection, and of course cigarette smoke. People with Alpha-1 get severe lung disease at a much younger age than most people with COPD, and some of them have never even smoked or come in contact with other lung hazards.

My friend Mary Pierce used to tell herself, “You dummy, you smoked. Of course you’re having trouble breathing!” But at the time she was only in her 40s. Finally, after getting more and more short of breath for years and then struggling just to breathe all night, she went to a doctor who said, “You’re way too young to have this much lung disease.” He tested Mary and told her a few days later that she had this thing called Alpha-1.

Everybody with COPD should know about Alpha-1 and this month we have some great new resources here at Breathing Better Living Well (BBLW).

Let’s get started with a short video. Short of Breath? Get Tested tells you about the signs and symptoms of Alpha-1. Note that Alpha-1 is actually both a lung – and a liver – disease. In babies and children the liver is affected and in adults, it’s the lungs. So, that’s why this video mentions babies.

Now, here’s an absolute must-see… It’s an excellent video telling all about Alpha-1 itself, the way it is inherited, interviews with a lung doctor, and the stories of two families impacted by Alpha-1. You’ll meet two sisters with Alpha-1 and learn how it affects them in different ways, and you’ll also hear the story of Len Geiger. I have to tell you, if you watch this video and don’t wind up with a lump in your throat… and a song in your heart, well… you just have to see it. Click here to watch The Disease that Destroys the Lungs and then tell your friends – and your doctor!

The Alpha-1 Foundation offers a wealth of information where you’ll find more basics, including questions from patients just like you, and answers from our friend, Dr. Robert (Sandy) Sandhaus.

You can find all of the above with one click on our BBLW Basics page including basic information, a quiz, and resources. You can find Alpha-1 stories Embracing the Mission and Len Geiger Lives Beyond Your Wildest Dreams on our stories page.

Speaking of stories… since our last update, we’ve had a great response to our asthma stories. If you haven’t seen them already, take a look at A Parent’s Worst Nightmare: How My Daughter Nearly Died from Asthma, as told by BBLW member Kandy Blankartz, and It’s Just Asthma, a very personal story that changed the course of my life. Share these stories. It might just save a life!

We found a great new book and it’s in our bookstore! COPD: The Facts, by Graeme Currie, was written for people with COPD and their families. In it you’ll find signs and symptoms, learn how COPD is diagnosed and the tests and treatments patients are likely to experience.

Mary Pierce's story about her battle with Alpha-1, Janet VanDommelen's story of how she overcame limitations from severe asthma, and other inspiring stories can be found in Breathe Better, Live in Wellness, also available in our bookstore. And for some fun “off-topic” summer reading visit our “Just Good Reads” section. Keep in mind that if you make any purchase from Amazon, books or anything at all, from any portal on our site, a few cents from that purchase goes towards the cost of maintaining. Since BBLW is privately funded, we appreciate every little bit of help. 

There’s a new blog on the block! …the BBLW block, that is. Eileen, Darrell and Peg have started a blog to share more about Pulmonary Rehab. Take a look and see what they’ve done lately. Ask a question, or share your pulmonary rehab news. Rehab participants as well as professionals are welcome. And while you’re there, give yourself a lift with the Wellevation Quote of the Day.

Don't forget to take in the personal stories of life with COPD on video. Each story is just a few minutes long and I’m sure you’ll find something familiar, helpful, and inspiring!

Got a question about lung disease? Or would you just like a little company… you know, somebody who knows what you’re going through? Take a walk through our BBLW neighborhood, see what the gang is up to today, and say hi. Everyone is welcome!

Finally, I wanted to show you this picture taken at a recent meeting of our Jane, Drew Robinson, Mary Pierce, Ken WalkleyBetter Breathers’ Club. Here’s me and some folks with Alpha-1: Drew Robinson, Mary Pierce, and Ken Walkley. Mary told her inspiring story of Alpha-1, lung transplant and her amazing accomplishments. Now you might never guess it, but Ken does the most amazing work with tiny counted cross-stitch you’ve ever seen! He’s just completed a very special piece, an Angel, and he’s generously donating it to be raffled off to benefit the Alpha-1 Foundation. I just found this out, so I’ll have more details about it in the June newsletter.

That’s about it for now. Take care, my friends, breathe well today, keep your mind open to see things in a different way, and I’ll see you here next month!


“If you do what you’ve always done,
you’ll get what you’ve always gotten.”

~~~ Anonymous