What is Alpha-1?

Alpha-1 Antitrypsin Deficiency—also called Alpha-1—is a rare inherited condition (passed down through families) that can cause serious lung problems, especially early COPD or emphysema.

Your liver makes a special protein called alpha-1 antitrypsin (A1AT). This protein helps protect your lungs from damage. If you have Alpha-1, your body doesn’t make enough of this important protein, and your lungs can get hurt more easily—especially if you smoke or are around lung irritants.

Who Gets Alpha-1?

Alpha-1 is genetic, meaning it’s passed down from parents to children. You need to inherit the faulty gene from both of your parents to have the condition.

It’s more common than you might think—about 1 in every 3,000–5,000 Canadians has Alpha-1, but many people don’t know they have it.

Why It Matters

If Alpha-1 isn’t found early, it can lead to serious lung problems like:

• COPD
• Bronchiectasis
• Breathing issues at a younger age than usual
• Liver Disease
• Skin Damage

Knowing you have Alpha-1 means you can take steps to protect your lungs! If you have A1AD, your lungs are not fully protected and can be damaged more easily. Symptoms can appear in infancy, but many do not start until a person reaches middle age. Smoking, exposure to cigarette smoke or air pollution, and frequent infections put someone with A1AD at a higher risk of developing COPD. 

The treatment of COPD symptoms caused by A1AD is the same as other causes of COPD. Read more about these in Lung Saskatchewan's COPD Handbook.  

Should I Get Tested for Alpha-1?

Doctors now recommend testing for Alpha-1 in anyone who:
- Has been diagnosed with COPD
- Has asthma that doesn’t get better with treatment
- Has unexplained bronchiectasis
- Was diagnosed with COPD before age 40
- Has a family history of Alpha-1 or lung disease
- Has COPD but hasn’t smoked much

How is Alpha-1 Tested?

Testing is easy and often starts with a blood test to check your A1AT protein level.
If your level is low, your doctor may order a genetic (DNA) test to confirm Alpha-1.

If you’re diagnosed, it’s a good idea for close family members (like siblings or children) to get tested too.

Other tests that may be ordered include breathing tests and imaging tests such as chest x-rays and CT scans. Early diagnosis can help prevent COPD from developing.

Is There Treatment for Alpha-1?

Yes! While there’s no cure yet, there are treatments that can help protect your lungs.

One special treatment is called augmentation therapy. It gives your body the A1AT protein through IV infusions. This can help slow down the damage to your lungs.

You may be a candidate for this therapy if you have Alpha-1 and:
- You have COPD or emphysema
- You don’t smoke
- Your A1AT levels are very low
- You’re already using other COPD treatments

Talk to your healthcare provider to find out what’s right for you.

Support is Available – Join the AlphaNet Canada Registry

If you’ve been diagnosed with Alpha-1, we encourage you to join the 🗂️ Alpha-1 Canadian Registry.

This is a free and voluntary program supported by groups like the Canadian Thoracic Society and Alpha-1 Canada. It helps collect information to better understand the condition, improve treatments, and support future research.

✅ What the Registry Does:
- Collects medical and genetic information (with your permission)
- Tracks your health and how treatments are working
- Helps researchers find participants for clinical trials
- Raises awareness and improves care for people with Alpha-1

🩺 Why It Matters:
- Helps doctors better understand how Alpha-1 affects Canadians
- Supports new treatment options and research
- Informs health policy to improve access to care
- Encourages earlier testing and diagnosis

📋 How to Join:
1. Confirmed Diagnosis – You must have Alpha-1 diagnosed by a blood or genetic test.
2. Healthcare Referral – A doctor (like a lung or liver specialist) can refer you.
3. Consent – You’ll review and sign a form that explains how your information is used and your rights.
4. Data Collection – You may fill out forms and allow access to medical records. Your info stays private.
5. Optional Research – You may be asked to join studies or trials, but only if you want to.

💬 Ask your doctor if they are connected to the Alpha-1 Registry.
You can also contact Alpha-1 Canada for help:
📧 Email: info@alpha1canada.ca
🌐 Website: AlphaNet Canada.