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Living With Alpha 1

Learn the 7 things “alphas” should know to protect their health while managing a rare disease that can affect the lungs and liver.

illustration of the lungs, trachea and bronchial tubes in yellow and red flowers

Being diagnosed with a rare disease like alpha 1 antitrypsin deficiency can feel daunting and lead to many questions about how to manage the condition. Augmentation therapy – infusions to provide the missing protein – are typically recommended. What else can you do to develop healthy habits and stay well? Here are seven tips:

  1. If you smoke, it is important to quit. Those with alpha 1 are unable to produce the alpha 1 antitrypsin (AAT) protein, and insufficient AAT protein in the blood can lead to lung damage and liver disease. Smoking can inactivate what remains of the AAT protein in the lungs and can further increase deterioration of the lung.
  2. Guard your lungs against irritants like inhaled pollutants, such as pollen, dust and second-hand smoke.
  3. Clean with care. Household chemicals, such as cleaning products that contain chorine and ammonia, can irritate the lungs and cause or worsen lung problems.
  4. Good eating habits may help to preserve lung and liver function. Consider speaking with a nutritionist or registered dietician to develop a nutrition program based on your current needs. For those who have alpha 1-related liver complications, your care team might recommend reducing sodium intake to decrease fluid retention.
  5. Always consult your doctor, but physical activity is generally encouraged for people with alpha 1, so stay active if possible. Workouts could target leg muscles and the muscles of the chest and upper body that are engaged when breathing. Walking, biking, swimming and yoga also could be options.
  6. Be an advocate for early diagnosis by speaking with family members about getting tested for alpha 1, a genetic condition that can be passed from parent to child. A blood test can diagnose alpha 1.
  7. For nearly 20 years, CSL Behring has been committed to supporting the alpha 1 community through testing and treatment. The company is working to optimize plasma collection and expand manufacturing capability to meet the needs of all alpha 1 patients. The company thanks the alpha 1 community for encouraging plasma donations needed to produce therapies patients need.