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.

Minimise exposure to irritants such as chemicals, pollution, dust, and ozone. Protecting yourself against lung infections is highly advisable. Most physicians recommend pneumonia vaccines and annual influenza shots.

It's best to err on the safe side: the risk of exposure to any type of irritant, bacteria or virus that could make its way to the lungs should be minimised. 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, avoid excessive alcohol intake. Also, be sure to read labels of over-the-counter medications or herbal supplements carefully, and ask your doctor about options which minimise impact on your liver. 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.

The same things that are good for everyone are good for Alpha patients: exercise, diet, and generally taking care of oneself, all crucial to maintaining a good quality of life if living with Alpha-1.

The following health management resoures are available online:

  • AlphaNet
    • Access AlphaNet's Big Fat Reference Guide (BFRG), the most comprehensive guide and self-management program available for individuals living with Alpha-1. You'll be asked to register so that a personalised version of the BFRG can be displayed each time you visit, and you can be notified of updates.

 

 

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.