A positive diagnosis of alpha-1 antitrypsin deficiency represents an opportunity to take concrete steps to avoid risk factors, limit symptoms, or slow the progression of symptoms you may already be experiencing. Proper care by you and your doctors can have significant positive effects for the rest of your life. Not everyone with A1AD develops symptoms and even if you have, proper treatment by your doctors and lifestyle changes you can make, will significantly increase the quality and quantity of your life. Similarly, even if you have developed symptoms, appropriate medication, treatments, exercise, and lifestyle changes, can go a long way toward ensuring you live a long and happy life.
Your doctor or consultant is the best person to provide information about the medications and treatment available for you now, and to look after you in medical terms, but there are important steps you can take to help take care of yourself.
Be involved in your healthcare
It is important that you develop a good relationship with your doctors and consultants. Things are improving, but unfortunately, many are still not very knowledgeable about A1AD, so they may not always have the answers you are looking for. If that is the case, it would be advisable to ask for a referral to one of the NHS alpha-1 clinics.
One of the first things you need to know is exactly which A1AD genes you have, without that knowledge it is difficult to know how the diagnosis will affect either you or your family.
If you are symptom free, you have a good chance of remaining so by making small but important changes in the way you live.
Smoking
Cigarette smoke is the greatest risk factor for developing life threatening symptoms. If you are a smoker, the single most important thing you can do to help yourself is to give up immediately. Second hand smoke should also be avoided wherever possible.
Lung Irritants
Avoid other lung irritants, especially environmental pollutants used in agriculture, mineral dust, gas and fumes.
Exercise and Nutrition
Regular exercise and good nutrition are beneficial in maintaining lung health, as is maintenance of the fat-soluble vitamins (A, D, E and K).
Eating a well balanced diet should provide good amounts of these fat soluble vitamins, although extra supplements may be advised by your doctor.
Remember, Alpha-1 is also a liver condition and fat soluble vitamins are stored in the liver and fatty tissues. Large doses of some vitamins can harm the liver.
Even if your symptoms are limited to respiratory problems, you also need to take care of your liver in order to minimize the possibility of liver disease.
Avoid things that may cause extra harm to the liver such as an excess of alcohol, street drugs, some over the counter drugs and certain prescribed medications.
There is no specific treatment for Alpha-1 associated liver disease. Eating a well balanced, healthy diet that contains plenty of fruits and vegetables, is essential to provide your liver with the antioxidantsthat it needs to protect against inflammation.
Frequently Asked Questions
