AlphaMale

Double-duty dog needed

If ever there was a family that would get huge benefits from one trained dog, it would be this family in Arizona.

A little more time for Alpha-1 survey

 A letter recently mailed to thousands of Alphas and Alpha-1 carriers across the United States asked them to fill out a survey on their opinions and experiences about:

• The Alpha-1 community programs now available
• What you think the community needs most right now
  
• Whether you're having problems with access to medical care
• Where we need to advocate on behalf of Alphas as the healthcare reform changes continue.
• And anything else you want to comment on.

The survey deadline was supposed to be today, Jan. 21. Unfortunately, the U.S. Post Office took an average of 12 days to deliver the letters (sent First Class).

For that reason...

The deadline has been extended to Thursday, Feb. 3.

The survey is a collaboration between the Alpha-1 Foundation and the Alpha-1 Association.

More information here: 

Dr. Oz talks about Alpha-1

The subject was cancer on the Dr. Oz show today.

In an answer to a question from a woman in the audience about lung cancer running in her family, Oz and his on-stage experts mentioned smoking, the obvious risk factor, then radon gas, then asbestos, an environmental factor growing less and less common.

Then Oz brought up a genetic risk factor, and explained it pretty clearly: Alpha-1 Antitrypsin Deficiency.

I wish the topic had been COPD, rather than cancer, but it was great anyway.

Hitting me up for a buck

That's what they're doing.

And everybody should do it this well.

You've come a long way, baby

In 1968, Philip Morris marketed Virginia Slims cigarettes to women with an advertising strategy showing canny insight into the importance of the emerging women's movement. The slogan "You've come a long way, Baby" later gave way to "It's a woman thing" in the mid-1990s, and more recently the "Find your voice" campaign featuring women of diverse racial and ethnic backgrounds. The underlying message of these campaigns has been that smoking is related to women's freedom, emancipation, and empowerment.

COPD used to be considered an old man's disease.

Think of smoker's cough. It's easy to see the old coot getting up in the morning, lighting one up even before he gets dressed, and coughing his way to the bathroom.

Today, more women have COPD than men.

That's almost certainly because smoking for women became very, very cool in the decade following 1968.

We're all suckers for whatever we think is cool

How do we encourage young people to feel that smoking isn't cool at all?

The Number 3 Killer

For 50 years, strokes have been the third leading cause of death in the United States, after heart disease and cancer.

We've been told that COPD -- lung diseases -- would take over the third spot by the year 2020. Now we're told COPD, a condition that most of us Alphas share, rushed into third place 12 years early -- in 2008.

Thanks to the smoking boom 30-40 years ago, especially among women, lung disease is rising fast as a killer. But did it suddenly speed up?

No. Turns out, we're just counting differently. David Mannino is among the lung specialists who say deaths from COPD have been under-counted for many years. He's quoted here.

The unadoptables

Ever raise a child?

Then one of the things you know, down to your bone marrow, is how much work it is to do this job well. That's true of any child, including a reasonably healthy kid facing all the usual challenges of growing up.

How do you feel about adopting a child? Let's say a child with brain damage, severe physical problems that will require medication for a lifetime, and emotional problems caused by rejection and neglect.

Here's how I feel: Overwhelmed at the very idea.

This is why some children are usually considered unadoptable: Most people feel the way I do. But amazingly, not everybody.

 

 

Vitamin D and the U.S. government

Vitamin D: I start with the maximum. Then I double it.

During the winter, once a week, I take a 50,000 mg capsule of Vitamin D. I do this even though I live in the deep South of the United States, where I could just go out into the sunshine between 10 am and 2 pm for half an hour two or three times a week wearing shorts or swim trunks and get all the Vitamin D I need.

I could do this, but like most people, I don't.

A committee of the Institute of Medicine, which describes itself as "an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public," has just recommended slightly higher levels of Vitamin D supplements.

The recommendations are ridiculously low, as are the recommendations the U.S. government has been suggesting for years.

The committee says nobody should take more than 4,000  of Vitamin D a day. Too much can cause kidney stones, they say. I take nearly double that amount, all winter, every winter. There's no chance this will cause me to make kidney stones. There's an excellent chance it will help my immune system to fend off colds, the flu, and the lung exacerbations that increase in people with Alpha-1 during the winter.

Elena Christofides, MD, is appalled by the new recommendations. I agree with Dr. Christofides.

Here's the story

Today is Alpha-1 Awareness Day.

Also, World COPD Day.

Is anybody paying attention?

My thought is, we're all more likely to pay attention to people's stories than we are to National This Day or International That Day.

Wanna see some good stories? Let me tell you some.

 

Take that, Cochrane!

This year, a Danish researcher named Peter Gøtzsche said his analysis of two studies showed there's no evidence that Alpha-1 augmentation works.

This month, two researchers analyzed the same studies and said they show that augmentation works exactly as it's supposed to -- it slows loss of lung tissue.

Those are the same, exact studies. And these conclusions are as exactly opposite as I can imagine.

Who you gonna believe?

Well, the Alpha-1 Foundation blasted Gøtzsche and said his review was so flawed it might ruin the reputation of the Cochrane Library, which published it.

The big underlying fear is that health insurance companies might jump on Gøtzsche's conclusion and refuse to pay for augmentation, which is expensive.

The new analysis, published in the journal Respiratory Research, is by British Professor Robert Stockley, MD, who is on the Foundation's Medical and Scientific Advisory Committee, and Danish Professor Asger Dirksen, who was the lead author of the only two studies being discussed here.

Talecris Biotherapeutics paid for the analysis published in Respiratory Research, and for one of Dirksen's original studies. Talecris manufactures Prolastin-C, the dominant augmentation therapy.

Just about everybody except Gøtzsche agrees we really need a bigger study to settle this question.

As for me, I'll keep on sticking myself once a week.