Alpha-1 and Some Pretty Great People

Remember the flight home from Orlando I had a few weeks ago?  The one where I ranted and raved about the woman sitting across the aisle from me?  Well, let me share the story of the OTHER people on the flight with me.

As you all probably know, my mom was diagnosed a few years ago with COPD (Chronic Obstructive Pulmonary Disease).  As a life long smoker, my mom used to always feel very proud of herself that despite numerous bouts with bronchitis, and that chronic smoker’s cough she had, every lung x-ray and test always came back normal.  And then things got bad fairly quickly.  A bronchitis she couldn’t shake turned into something more asthmatic, and eventually, the COPD diagnosis.  It wasn’t an unexpected diagnosis, and COPD is something that most people are well aware of.  There are television commercials, loads of literature, and you’ll see commercials for some of the medications that are widely available for the treatment of the symptoms of COPD.

But I had never heard of something called Alpha-1.  Alpha-1 is a genetic disease that you can pass on to your children, and the disease has some of the very same symptoms you might encounter if you have something like COPD.  Alpha-1 sufferers experience:

  • Shortness of breath
  • Wheezing
  • Chronic cough and sputum (phlegm) production (chronic bronchitis)
  • Recurring chest colds
  • Decreased exercise tolerance
  • Non-responsive asthma or year-round allergies
  • Bronchiectasis
And if you turn up at a doctor’s office with these symptoms, you are most likely NOT going to be tested for Alpha-1 first, even though diagnosis of the condition is done through a very simple blood test.  I wonder if the reported incidents of Alpha-1 are low because there are Alpha-1 sufferers who are being treated for COPD?
Next to me on the plane home were Larry and Marian Hoffman.  Larry was diagnosed not too long ago with Alpha-1.  The Alpha-1 Association flew Larry and Marian down to Orlando for the 19th Annual National Education Conference, and treated them like royalty.  And let me tell you, these are two people who absolutely deserved the royal treatment.  Larry couldn’t have been any nicer, despite being dealt a blow that altered his existence in this world; and Marian was absolutely amazing, supporting her husband, taking on the role of a volunteer with the organization, and still being one of the nicest people I could have met.
It is wonderful to hear stories like their’s – especially knowing that in an effort to help them deal with the disease they are battling, the organization invested the time and the money in making sure they are armed with the latest information on how to treat and what to expect.  When you are looking for causes to support, consider the Alpha-1 Association – their investment back into the education of Alpha-1 patients is something I don’t think I’ve ever heard of with other organizations.
For more information on this condition – including how to see if you might be an Alpha-1 sufferer, visit their website at http://www.alpha1.org/ .
Larry and Marian, thank you both for taking the time to talk with me and share with me the information on this condition.  I know it is with the help of your warm and friendly personalities, and your commitment to the education of others about this condition, that others will benefit in finding the proper diagnosis and treatment.  Love to both of you!