Now that you or a family member have been diagnosed with Alpha-1 Antitrypsin Deficiency (AATD), 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 (AAT) 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 AATD patients: exercise, diet, and generally taking care of oneself, all crucial to maintaining a good quality of life if living with AATD.
The following health management resoures are available online:
- Access AlphaNet's Big Fat Reference Guide (BFRG), the most comprehensive guide and self-management program available for individuals living with AATD. 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.