“It’s all in the Family” is the Alpha-1 Foundation’s program to help Alphas and Alpha-1 carriers tell their families about Alpha-1. Family testing for Alpha-1 could improve the lives and health of the people you love. If you have Alpha-1 Antitrypsin Deficiency (Alpha-1) – or are an Alpha-1 carrier – we suggest that your relatives be tested.
1. I have a brother or sister with Alpha-1
2. I have a parent or child with Alpha-1
3. I have a family history of Alpha-1
4. I have one of these conditions: COPD, emphysema, chronic bronchitis or bronchiectasis
5. I have unexplained liver disease
6. I have a family history of lung or liver disease
7. I have the skin disease panniculitis
If you chose True for any of the above questions, you show risk factors for Alpha-1. You can learn more here.
If you have one or more of the following risk factors, you should be tested for Alpha-1:
- A family history of Alpha-1. (Parent, child or sibling is diagnosed with the condition.)
- One of these conditions: COPD, emphysema, chronic bronchitis or bronchiectasis.
- Unexplained liver disease.
- A family history of lung or liver disease.
- The skin disease panniculitis.
Depicts a few options for gene inheritance
Informed consent is the process through which a person receives appropriate information, understands that information, and agrees to testing. It originates from the legal and ethical right the patient has to direct what happens to their body, and from the ethical duty of the physician to involve the patient in their healthcare. You should discuss the decision to get tested for Alpha-1 with your doctor and make sure all of your questions are answered.
Your relatives may also have one or two Alpha-1 genes and not be aware of their own health risks. If they learn they have Alpha-1, they may consider different lifestyles, jobs or other decisions that could maintain or improve their health. Their doctor may also be able to give them better medical advice. The benefits of testing include:
- Deciding to stop cigarette smoking, seeking help if necessary;
- Choosing never to smoke;
- Avoiding secondhand smoke;
- Avoiding harmful environmental and occupational exposures;
- Avoiding excessive alcohol use;
- A better dialogue with healthcare providers about preventive care and improving health.
- May be personally unsettling
- May affect your ability to get life and disability insurance
- May influence willingness of employers to hire you
- May create stress in your family
- May increase your personal health care costs
For more information about informed consent and Alpha-1 testing, visit Testing for Alpha-1.