The Alpha-1 Foundation has a website dedicated to Alpha-1 patients and caregivers. It offers a wealth of information and resources about about the disease.
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition. Alpha-1 may result in serious lung or liver disease in those affected. Symptoms of Alpha-1 Antitrypsin Deficiency (Alpha-1) include shortness of breath, wheezing, chronic bronchitis, recurring chest colds, year-round allergies, and bronchiectasis.
When you or a loved one gets a diagnosis of Alpha-1 you may deal with feelings of guilt, anger, frustration, helplessness, or fear. These feelings are perfectly normal and the first thing to know is that you are not alone. There are resources out there designed to help.
The Alpha-1 Foundation has worked hard to make its website a potential starting point for someone who is newly diagnosed. Their webpage, entitled “What Now” offers a comprehensive guide for those with a new Alpha-1 diagnosis.
What you can do the day of receiving a diagnosis:
Knowledge is power
There are a few numbers you can call to immediately learn more about Alpha-1 and the recourses accessible to you.
There is a Patient Education Line at (1-800-245-6809) which can offer resources or personalized peer connections with other Alpha-1 patients. They can even give physician referrals and connect callers with a Support Group. This is a free and confidential program available to the public.
A Genetic Counseling Hotline, offered on the website, can help people understand what their test results mean. This hotline can also give information about risk factors, testing, and how to manage your health. The number is (1-800-785-3177)
What you can start doing in the first week after diagnosis:
- Quit smoking and keep away from second hand smoke
- Avoid being around dust or any fumes
- Make a point to exercise regularly
- Eat a well-balanced diet
- Avoid alcohol beverages if you have liver damage or drink very infrequently in low amounts
- Examine the labels of your over the counter drugs, herbal supplements, etc for the ingredients acetaminophen and alcohol (ingredients which you should be cautious of)
- Tell your doctor about all the medicines and herbal supplements you are taking
What you can plan for in the long term:
For some, lung or liver transplants may be an option to explore. This is usually reserved only for those who are very sick and have severe lung or liver disease. Before being put on a transplant list, a patient will have to have a referral to a specialized transplant center and undergo extensive physical and psychological testing.
If you are not a transplant candidate, you can work with your doctor to determine the best way to maintain your health. With the right education and support, many Alphas live a healthy and fulfilling life.