Your Alpha-1 Support System

Whether you’re an alpha or care for one, a strong support network is essential. While there are many resources for alphas, connecting with others can make a huge difference. Here are some ways to support one another and grow your alpha-1 support system.

Taking care of yourself

For people living with alpha-1:

Feeling your best starts with managing your alpha-1 and your overall health. Pay attention to your body, your symptoms, and your feelings, and stick to your treatment plan.    

  • Choose habits that support your well-being: Eat nutritious foods and include light exercise in your daily activities to boost your overall health, as advised by your doctor.
  • Keep up with your health routine: Make sure to schedule and go to all the medical and dental care appointments recommended by your healthcare team.
  • Protect your mental health: Emotional support is just as important as physical care. If you feel anxious or depressed, talk with your doctor or a counselor, or look for an alpha-1 support group* near you.

For caregivers of people living with alpha-1:

To be your best as a caregiver, take care of yourself first. By prioritizing your own self-care, you can rise to the challenges of caring for someone with alpha-1, while maintaining your own health and well-being. 

  • Focus on your own health: Keep up with your own medical checkups and dental visits. Eat a balanced diet, and take time for exercise and for your own hobbies and interests.
  • Prevent caregiver burnout: It’s common for caregivers to feel tired and overwhelmed. Talk about your feelings with others, get plenty of rest, and take breaks. Everyone needs time to rest and re-energize. Caregivers can provide more consistent support by making sure to take breaks.   
  • Remember you’re not alone: Reach out for support when you need it. The Alpha-1 Foundation offers a support group for caregivers of people with alpha-1.*

Managing stress

Stress is a normal part of life and something that everyone experiences occasionally. People with alpha-1 and their caregivers can learn positive methods for coping. Try to be aware of things that can trigger your stress reaction, and use the suggestions below to help relieve your stress:  

  • Make time each day for stress relief
  • Schedule time to unwind
  • Take regular breaks away from social media and news
  • Spend time relaxing outdoors
  • Connect with others at alpha-1 support organizations*
  • Participate in social activities or explore new hobbies
  • Connect with your faith through prayer or attending services

Practicing mindfulness

Mindfulness is about being present in the current moment, and being fully aware of thoughts, feelings, and body sensations without getting caught up in judgment or negative emotions. Mindfulness could help people with alpha-1 and their caregivers manage stress and improve their well-being.

How it works:

For a few minutes each day, focus on a simple activity like washing your hands or listening to music. Notice details: what you see, hear, or feel. If your thoughts drift, gently bring your focus back to where you are and what you are doing.

Getting started:  

With regular practice, you may find that mindfulness gets easier and more helpful. There are many different ways to work mindfulness into your daily routine. Seated meditation, walking, listening to the sounds of nature and your own body, and even daily activities can be ways to practice mindfulness and be in the moment.  

Growing your practice:

You may be interested in mindfulness classes,* which could include meditation, breathing exercises, yoga, or other methods to help you become more self-aware and in the moment. There may also be books about mindfulness and other resources at your local library.*

Strengthening your network

Everyone needs help sometimes. Asking for help is healthy and normal. When you have alpha-1 or care for someone who does, you should reach out when you need it. Here are some ideas and suggestions for growing and strengthening your social support network.  

Think about your support needs:

Do you have emotional, practical, informational, or advocacy support needs? Who is best equipped to help among friends, family, healthcare team, or others living with alpha-1? And is your goal less isolation, more resources, better care management, or something else?

Use conversation starters:

  • “I’m feeling a bit overwhelmed. Could you help with [specific task] this week?”
  • “It would help to have someone just listen right now. Is that okay?”
  • “Would you be willing to join me at my next appointment as support?”

Leverage community resources:

Remember what’s important:

  • Building trust takes time, so be patient and understanding
  • Focus on quality over quantity; a few reliable people matter more
  • Be open to connecting with others who may offer different kinds of support
  • Express gratitude and show appreciation when possible

Patients and caregivers are a team

When living with alpha-1 is a team effort, managing the condition and maintaining physical and mental health can be easier. From securing the help and resources you need to coping with the emotional challenges of alpha-1, a strong social network is crucial to your wellness. Patients and caregivers both play important roles, and open communication makes a big difference.  

Be open about needs and preferences:

  • Caregivers: Ask the person you support how they want help
  • Patients: Let your caregiver know what support feels most helpful (and what doesn’t)

Focus on communication:

  • Use clear, honest language and ask for what you need
  • Share educational resources so everyone understands alpha-1
  • Set boundaries: It’s okay to say, “I need you to just listen,” or “I’d rather handle this myself”

Make the most of healthcare appointments:

  • Prepare together by making a list of questions/concerns or discussing what you want out of the appointment
  • Decide what role each person will play: note-taker, advocate, listener, or questioner
  • After visits, talk over what you learned and plan your next steps

Consider your family’s health:

  • Alpha-1 is a genetic condition, passed from generation to generation
  • Even people without symptoms could pass the genes on to their children
  • Encourage adult family members to talk with their healthcare provider about possible screening

Stronger together

It takes patience and a flexible approach when you’re living with alpha-1 or caring for someone with it. Looking after yourself, nurturing your support system, and working together as a team can help you better manage the condition and improve your well-being. 

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.