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Alpha-1 Resources: Assorted Topics



Health Tips for Alphas
From the "Big Fat Reference Guide", this organized list of health tips covers all the general information an Alpha needs. Read more
Emergency Preparedness
The FDA website at www.fda.gov details the steps Alphas should know when natural disasters interfere with medications.
Medicare Coverage: Oxygen
Find the latest info at www.medicare.gov
Alpha-1 Nor'Easter: a Support Group Newsletter
We have an online sample of Joe Reidy's Alpha-1 Nor'Easter Newsletter in "pdf" format. (Get free Adobe Reader for "pdf" files if you need it.) If you wish to be added to Joe's Mailing List, contact him at the address listed in the newsletter.
Read Newsletter
Alpha-1 COPD love story
Cover of
Sally Everett has written a thoughtful, touching memoir. Pick up a hard copy or one for your Kindle.

Read an updated Alpha-1 Foundation article. Visit Sally's blog.

The Skinny on the Big Fat Reference Guide
AlphaNet's Big Fat Reference Guide is a comprehensive and authoritative guide to Alpha-1 Antitrypsin Deficiency. The print version is 4" thick!
Access through a simple, non-commital registration
State-by-State Insurance Information

The National Organization for Rare Disorders has created a state-by-state insurance information webpage
Alpha-1 Amazon Store
The Alpha-1 Association has announced the opening of their Amazon-based Alpha-1 Store. Visit
AlphaNet's Alpha-1 App
AlphaNet Alpha-1 App now available as a free download exclusively on iTunes. The App is compatible for use on iPhones, iPads and iPods--3rd generation and above. Visit AlphaNet for full details
Supplemental Oxygen Handbook
Created by the COPD Foundation and available as an Adobe "pdf" file. (Updated document)
US COPD Coalition Launches Website
Alpha-1 Goodies
Visit Alpha-1 Goodies to shop for Alpha-1 t-shirts, car magnets, wristbands, ties, greeting cards, dog bandanas, fridge magnets. Included are links for free access to the Big Fat Reference Guide Online and a free subscription to the Alpha-1-To-One Magazine.
Giving Blood or Tissue for Study
The Foundation shares a precaution.
Tips for a Fit Flight
Handy info for prospective fliers. Click through to page 100 of this American Airlines "American Way" E-magazine.
Alpha-1 Global
Alpha-1 Global logo Alpha-1 Global launches website.
Who Should Be Tested?

"Alpha-1 Antitrypsin Deficiency is one of the most common serious genetic disorders, worldwide. The disorder can cause severe lung and/or liver disease and is a leading reason for lung transplantation in adults and liver transplantation among young children. More than 100,000 Americans have the disorder, yet only 10,000 have been accurately diagnosed. Those with Alpha-1 call themselves Alphas.

A typical Alpha adult is a married, Caucasian man or woman in their late 50's, of Northern European descent (those Vikings got around), who has a history of smoking and has had breathing problems for about a decade. Usually incorrectly diagnosed, he or she is unable to work because of their medical condition and most likely receives disability benefits. Physically inactive and slightly overweight, they have most often been told they were asthmatic. The average Alpha is a ZZ who experiences shortness of breath with moderate or little activity and uses oxygen with some regularity. He or she usually suffers from high blood pressure and gastric reflux and receives a weekly home visit from a nurse to administer augmentation therapy.

Even with this data, experts are quick to point out 'we know, no one Alpha is typical'."
-from "AlphaNet: Putting Together the Pieces - a Report to the Alpha-1 Community"

Anyone with shortness of breath or unexplained liver involvement should consider Alpha-1 testing. Discuss this with your physician. There are also two free home testing choices available:
1) For free test kit, self-initiated/self-administered at home, with results sent to your doctor and entered in your medical history, call 1-877-228-7321,
2) For free test kit, self-initiated/self-administered at home, with results sent to you privately, call 1-877-886-2383.

WHO
The World Health Organization (WHO) recommends Alpha-1 testing for all COPD and asthma patients!
A Little Bit More Genetics
If you find the science behind Alpha-1 genetics pretty interesting, then these two web articles might just do the trick - the first introduces Alpha-1 and genetics, while the second goes into more detail about the Alpha gene.