Supporting Australian Alphas since 2002

What Now?

Now that you or a family member have been diagnosed with Alpha-1, there are some steps that you can take immediately to impact your health and there are resources available to you online to learn how to manage your disease.

Health Tips :

Number one: if you smoke, stop now! No other single factor can improve an Alpha's chance for survival as much as stopping smoking. Inhaling smoke into the lungs summons massive amounts of neutrophil elastase to the lungs. What's more, cigarette smoke renders the available alpha-1 antitrypsin useless.

Avoiding irritants such as chemicals, pollution, dust, and ozone is also extremely important. Protecting yourself against lung infections, when possible, is highly advisable. Most physicians recommend pneumonia vaccines and annual flu shots.

It's best to err on the safe side: any type of irritant, bacteria or virus that could make its way to the lungs should be avoided. This includes pollen, ash, wood burning stoves, etc. Limiting these risks-and thus reducing the amount of neutrophil elastase needed in the lungs-can have a profound effect on limiting lung damage.

To take care of the liver, drink alcohol rarely if at all. Also, be sure to read labels of over-the-counter medications or herbal supplements very carefully. Be sure to tell your healthcare provider about vitamins and supplements you take. You should also avoid chemicals that can be absorbed through the skin. This includes bleach, ammonia or other cleaning solvents.

Importantly, the same things that are good for everyone are good for Alpha patients: exercise, diet, and generally taking care of oneself are crucial to maintaining a good quality of life once you have Alpha-1. With Alpha-1, an ounce of prevention is the key.

The following health management resoures are available online:

AlphaNet

To access AlphaNet's Big Fat Reference Guide or BFRG, the most comprehensive guide and self-management program available on the Internet for individuals living with Alpha-1, please click here: BFRG You will be asked to register so that a personalized version of the BFRG can be displayed each time you visit and you can be notified of updates. The BFRG is the only health management program that has been shown improve health outcomes in people with Alpha-1 Antitrypsin Deficiency (reference: COPD, volume 6, issue number 1).

COPD Foundation

The mission of the COPD Foundation is to develop and support programs which improve the quality of life through research, education, early diagnosis, and enhanced therapy for persons whose lives are impacted by Chronic Obstructive Pulmonary Disease. If you have been diagnosed with COPD you can find information about some of the challenges and changes you may face, please click here.

Global Initiative for Chronic Obstructive Lung Disease

GOLD is a website dedicated to effective COPD management and prevention, increased awareness of COPD, and decreased morbidity and mortality from COPD. Too access the GOLD Patient Guide, an information guide for patients and their families. Please click here: What You Can Do About a Lung Disease Called COPD

Booklets

 The AAA has produced an information booklet which contains more detail about A1AD, and a poster for raising awareness. You can access the booklet and poster by clicking on the images below. The poster may be printed locally in A3 or A4 size. Please encourage your family doctor or respiratory physician to put a poster on display in the surgery or patient waiting area! For more information about A1AD, see our Links section.