Living with Alpha-1 Antitrypsin Deficiency impacts far more than just your lungs or liver—it affects your entire sense of well-being, your mental health, your physical capabilities, and your identity.
Mark Egly's story illustrates this profoundly. As a professional golfer and dedicated athlete, Mark spent ten years pushing himself harder and harder, believing what he was told: "There's nothing wrong with you." When breathlessness increased, when fatigue set in, when recovery took longer, Mark didn't question his body—he questioned his effort. He trained harder. He conditioned more intensely. He refused to accept limits.
But something WAS wrong. A rarely diagnosed disease called Alpha-1 Antitrypsin Deficiency was silently damaging his body while he blamed himself for not being strong enough, fit enough, or determined enough.
This is the hidden burden of AATD: the psychological toll of undiagnosed or poorly managed chronic disease.
The Mark Egly Foundation is committed to educating and assisting individuals to maintain optimal mental health and physical health by:
This comprehensive guide addresses the full spectrum of mental and physical health challenges faced by people with AATD—and the evidence-based strategies to thrive despite them.
What Many Experience:
Mark's Experience:
For ten years, Mark believed he just wasn't working hard enough. Each setback felt like personal failure. The undiagnosed disease didn't just damage his lungs—it eroded his confidence and sense of self.
The Psychological Toll:
Relief and Validation:
But Also Fear and Uncertainty:
This is Normal:
The mix of relief and fear is universal. Give yourself permission to feel both.
Chronic Disease Reality:
Additional Stressors:
Prevalence: Studies show 25-40% of people with chronic lung disease experience depression (higher than general population)
Signs and Symptoms:
Why So Common in AATD:
Important: Depression is NOT weakness or giving up—it's a medical condition that deserves treatment.
Prevalence: 30-50% of people with COPD experience anxiety disorders
Manifestations:
The Breathlessness-Anxiety Cycle:
Breaking the Cycle:
Triggers in AATD:
Symptoms:
Seek Help: PTSD is treatable with trauma-focused therapies (EMDR, prolonged exposure, CPT)
What It Is:
Difficulty adjusting to diagnosis, treatment changes, disease progression, or life changes related to AATD
Symptoms:
Common Triggers:
After Loss:
Healthy Grief vs. Complicated Grief:
Support Helps: Grief counseling, support groups, time, self-compassion
One of the Most Common and Debilitating Symptoms
Causes:
Impact:
Management Strategies:
The Most Frightening Symptom for Many
Characteristics:
Psychological Impact:
Management:
The Downward Spiral:
Breaking the Cycle:
Mark's Experience:
As an athlete, Mark's instinct was to push harder. But with AATD, the key is working smarter—pacing, using oxygen if needed, choosing appropriate exercises, and building endurance gradually without causing exacerbations.
Causes:
Impact:
Prevention and Treatment:
Common Issues:
Impact of Poor Sleep:
Solutions:
Sources in AATD:
Impact:
Management:
Why Nutrition Is Affected:
Consequences:
Strategies:
Risk Factors in AATD:
Prevention:
Why AATD Affects Immunity:
Prevention Strategies:
Scientific Reality:
Evidence:
The Foundation's Philosophy:
You cannot separate the mind from the body. Optimal care means treating the whole person.
Don't wait until crisis—early intervention is most effective.
Seek help if:
Where to Start:
Cognitive Behavioral Therapy (CBT):
CBT Techniques Particularly Helpful in AATD:
Acceptance and Commitment Therapy (ACT):
Mindfulness-Based Stress Reduction (MBSR):
Interpersonal Therapy (IPT):
Supportive Therapy:
Antidepressants:
Anti-Anxiety Medications:
Other:
Important Considerations:
Why It Matters:
Techniques:
Deep Breathing:
Progressive Muscle Relaxation:
Mindfulness Meditation:
Guided Imagery:
Yoga and Tai Chi:
Why It's Vital:
Strategies:
Stay Connected:
Join Support Groups:
Online Communities:
Peer Mentorship:
Volunteer or Give Back:
Why Purpose Matters:
Finding Meaning:
Mark's Purpose:
After diagnosis, Mark channeled his experience into founding the Mark Egly Foundation—transforming personal struggle into a mission to help others. This created profound meaning and hope despite ongoing health challenges.
Your purpose doesn't have to be starting a foundation—it can be:
Evidence-Based Benefits:
How to Practice:
Even With AATD:
Gratitude doesn't deny struggle—it coexists with it.
Benefits of Exercise in AATD:
Types of Exercise:
Getting Started:
Warning Signs to Stop Exercise:
Rest and seek medical attention if these occur.
Overcoming Barriers:
"I'm too breathless to exercise":
"I'm too tired":
"I'm afraid I'll make my condition worse":
"I don't have time/money for gym":
Sleep Hygiene Practices:
Consistent Schedule:
Bedtime Routine:
Sleep Environment:
Daytime Habits:
If Can't Sleep:
Address Underlying Issues:
Key Principles:
Adequate Calories:
Sufficient Protein:
Anti-Inflammatory Diet:
Hydration:
Small Frequent Meals:
Specific Nutrients:
Avoid:
Absolutely Essential:
Resources:
It's Never Too Late:
Even with advanced disease, quitting improves breathing, reduces exacerbations, slows progression.
Protect Your Lungs:
Indoor Air Quality:
Recommended Vaccines:
Infection Prevention:
The Unique Challenges:
Adaptations:
Mark's Wisdom:
"Training harder when you have undiagnosed AATD doesn't make you stronger—it accelerates damage. Once diagnosed, training smarter with the right support can help you maintain athletic pursuits safely."
Specific Issues:
Support:
Unique Stressors:
Support:
The Invisible Patients:
Self-Care for Caregivers:
Caregiver Support Resources:
Resilience = ability to adapt well in the face of adversity, bounce back from difficulties, maintain well-being despite challenges
Not:
Is:
Internal:
External:
Behaviors:
Some People Report Positive Changes After Trauma/Illness:
Possible Growth:
This Doesn't Mean:
It Means:
We believe:
We provide:
1. Early Diagnosis Initiatives
2. Comprehensive Wellness Support
3. Education and Empowerment
4. Advocacy
5. Research Support
Crisis Support:
Mental Health Treatment Locators:
AATD-Specific:
Apps:
Pulmonary Rehabilitation Locator:
Exercise Resources:
Nutrition:
Sleep:
You Have More Power Than You Think:
Even with a chronic disease you didn't choose, you can:
Progress, Not Perfection:
Mark's Message:
"For ten years, I blamed myself for symptoms caused by an undiagnosed disease. Once diagnosed, I learned that while I can't control having AATD, I can control how I respond to it. I can optimize my physical health through treatment, exercise, and self-care. I can protect my mental health through support, purpose, and resilience. And I can use my experience to help others avoid the suffering I endured. You have that same power. Use it."
Need Support for Mental or Physical Health?
Mark Egly Foundation:
Remember: You Are Not Alone. Help Is Available. Hope Is Real.
Your mental health matters as much as your lung function. Your quality of life matters as much as your survival. You matter—all of you, not just your diagnosis.
Let's optimize mental AND physical health together.
Last Updated: December 2025
This information is for educational purposes and should not replace consultation with your healthcare providers or mental health professionals.