Living with Alpha-1
Alpha-1 can feel overwhelming, but there are ways to develop healthier habits that make managing your condition easier.
“You are your own best advocate. It may seem overwhelming initially, but there are so many resources available to you.”
Change takes time, so start small.
Why not give yourself a new challenge every week as you work toward more consistent wellness habits? Explore the recommendations below for simple steps you can take toward each goal. Make sure to consult with your doctor to determine what works best for you.
Eat right for you
Maintaining a healthy diet can provide the energy your body needs to help fight inflammation and promote overall wellness. Talk to your doctor about dietary recommendations for people with alpha-1 and for your needs specifically. Your healthcare provider can help determine your nutrition needs based on your health history.
Plan your meals
Create a meal plan each week that supports your nutrition goals. Planning can help you make better decisions at the grocery store too.
Choose better options
Replace sugary or salty snacks with healthier options like nuts, yogurt, or fresh fruit.
Watch how much you eat
Learn about portions and serving sizes* to help with weight management.
Quit smoking and avoid secondhand smoke
Smoking may speed up lung damage in patients with alpha-1. If you smoke, quitting is an important step to protect your health. Even if you’ve already quit, or never smoked at all, you should still avoid secondhand smoke.
Talk to your doctor about the steps for quitting
Your doctor may prescribe nicotine replacement therapies or medications that could help you quit.
Find support
Finding support is critical when you want to quit smoking. There are groups, apps, and other online resources that can aid your journey to a smoke-free life.
Know your triggers
It may be helpful to keep a journal. You can write down when and why you smoke, such as stress or certain social situations, and think about how to manage stress in other ways.
Set a quit date
Choose a specific day to quit smoking, mark it on your calendar, and ask supportive people in your life to help encourage you.
Protect yourself from infections
People with alpha-1 may be more vulnerable to respiratory infections, but there are steps you can take to protect yourself.
Stay up to date on vaccinations
Vaccines help prevent infectious diseases. Ask your doctor about vaccines for flu and pneumonia, and about any other recommended vaccines based on your health history.
Wash the germs away
Frequently wash your hands, scrubbing with water and antibacterial soap for at least 20 seconds, especially after being in public spaces.
Keep your distance
Politely decline visits or wear a mask if someone around you is unwell.
Take action
If you get sick, treat it right away. Call your doctor at the earliest sign of cold or flu, and follow their instructions.
Stay aware of the air
Airborne substances can trigger inflammation and contribute to lung damage. Protect your lungs by avoiding and reducing exposure to smoke, dust, and other irritants whenever possible.
Use a mask
Always wear breathing protection when exposed to irritants like cleaning products, chemicals, or outdoor pollutants.
Maintain your environment
Use air purifiers at home, change air-conditioning system filters regularly, and avoid areas with heavy dust or smoke.
Know before you go
Make sure to check the local air quality daily and adjust your plans if needed.
Stay active
Regular, low-impact exercise can help improve your mental and physical well-being. Discuss your goals with your doctor and make an exercise plan that fits your needs.
Start small
Begin with gentle activities like walking or light stretching for 10–15 minutes per day.
Use a buddy system
Exercise with a friend or family member to stay motivated and accountable. Even a remote buddy from across the country can help. You can connect with other alphas through AlphaNet®.*
Track your progress
Use a fitness tracker or journal to log your steps, minutes of activity, or how you feel after exercising.
Be kind to yourself
Whether patient or caregiver, remember to show kindness to yourself too. Make room for some self-compassion with these suggestions.
Don’t worry about perfection
Give yourself room to make mistakes, because it’s the only way we can learn and grow. The important thing is to keep trying and moving forward.
Treat yourself right
You can learn to be more understanding and accepting toward yourself. There are techniques and exercises* available to help you.
Remember that you’re not alone
Others have been where you are now. They went through similar challenges. Find a safe space to share your journey* with others. Your AlphaNet Coordinator* can help too.
Involve your family or friends
The support of your family members or close friends is incredibly valuable. Also, keep in mind that alpha-1 is a genetic condition, meaning you could pass it on to your children. Your health experience may also inform theirs.
Educate them
Share information about alpha-1 with your family so they understand your condition.
Set common goals
Work together on healthy habits, like eating better or exercising.
Tell them to get tested
Encourage family members to get tested for alpha-1, especially if they show symptoms.
Ask for help
Family and friends can help with preparing meals, running errands, or attending appointments. Learn how to strengthen your alpha-1 support system and improve communication.
Build a routine around your medical care
Regular medical checkups are essential to helping your doctor manage your alpha-1. You can stay consistent and be more confident with these tips.
Create a calendar
Schedule all your infusion appointments, doctor visits, and tests in a special planner or phone app.
Track your symptoms
Use a notebook or an app to keep track of your symptoms and how they change. This way you can share your symptoms with your doctor at your appointment.
Prepare for appointments
There may be questions you want to ask your doctor, or symptom changes you need to tell them about. Write them down when you think of them, and make sure to take your notes to your appointment.
Small steps can lead to big changes.
Living with alpha-1 isn’t easy, but you have the power to take small, meaningful steps toward a healthier life. Every step counts, and you’re not alone on this path.
There’s help at every step.
Seamless support makes starting and staying on treatment easier. Shipping your medicine and scheduling and administering your infusion are all handled by the PROLASTIN DIRECT® program.
Important Safety Information
PROLASTIN®-C LIQUID is an alpha1-proteinase inhibitor (human) (alpha1-PI) indicated for chronic augmentation and maintenance therapy in adults with clinical evidence of emphysema due to severe hereditary deficiency of alpha1-PI (alpha1-antitrypsin deficiency).
Limitations of Use
- The effect of augmentation therapy with any alpha1-PI, including PROLASTIN-C LIQUID, on pulmonary exacerbations and on the progression of emphysema in alpha1-PI deficiency has not been conclusively demonstrated in randomized, controlled clinical trials
- Clinical data demonstrating the long-term effects of chronic augmentation or maintenance therapy with PROLASTIN-C LIQUID are not available
- PROLASTIN-C LIQUID is not indicated as therapy for lung disease in patients in whom severe alpha1-PI deficiency has not been established
PROLASTIN-C LIQUID is contraindicated in immunoglobulin A (IgA)-deficient patients with antibodies against IgA or patients with a history of anaphylaxis or other severe systemic reaction to alpha1-PI products.
Hypersensitivity reactions, including anaphylaxis, may occur. Monitor vital signs and observe the patient carefully throughout the infusion. If hypersensitivity symptoms occur, promptly stop PROLASTIN-C LIQUID infusion and begin appropriate therapy.
Because PROLASTIN-C LIQUID is made from human plasma, it may carry a risk of transmitting infectious agents, eg, viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent. This also applies to unknown or emerging viruses and other pathogens.
The most common adverse reactions during PROLASTIN-C LIQUID clinical trials in >5% of subjects were diarrhea and fatigue, each of which occurred in 2 subjects (6%).
Please see full Prescribing Information for PROLASTIN-C LIQUID.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch, or call 1-800-FDA-1088.
*This website is provided as a resource only and does not constitute an endorsement by Grifols of any particular content. Grifols does not review or control the content of non-Grifols websites.