An Alpha’s Story
Personal Story of Ben Hund, Founder of Alpha-1 Village
For the past fifteen years, I owned and operated a successful business in the bio-tech industry. In March of 2008, I flew to Allentown, PA with a business associate to visit a client. As we left, I remember feeling as though I had the flu but I planned to use OTC medications to relieve my symptoms and keep my scheduled appointments. When we arrived in Allentown, my breathing had become so difficult that I repeatedly stopped to catch my breath as I carried my luggage to our rental car. My associate is an asthmatic and was carrying an emergency inhaler. For the next 24 hours I relied heavily on his inhaler in order to breathe comfortably. After our sales call on Monday, I drove to meet my wife Karen in New York City where we had planned to attend a trade show together.
I arrived in New York Monday evening and cancelled plans for dinner with Karen and friends. I took over the counter cold and flu medications and went straight to bed. I awoke the next morning and attempted to walk. I was unable to stand and fell to the floor. Breathing had become almost impossible for me at this point. I woke Karen and asked her to book us on the first available flight home. I wanted to die at home, not in a New York hotel room. I recall very little from that time until I was in my doctor’s office later that afternoon.
Initially, I was diagnosed with and treated for pneumonia. Upon further investigation, my physician noticed irregularities in the x-rays of my lungs. She scheduled a CT-scan and referred me to a pulmonologist. The CT-scan indicated emphysema/COPD and the pulmonologist recommended an Alpha-1 blood test as I just didn’t “fit in a box.” Despite my use of tobacco, I was far too young and in too great of physical shape to have developed this lung disease. One month later, test results confirmed Alpha-1 disease. I was 45 years old. At this point, I began to search Google for my “miracle cure.”
After my initial diagnosis, the next three years of my life again became a blur. Would I live to see my son, Benji, grow into adulthood? Would my quality of life continue to deteriorate? Would I be able to continue to enjoy bike racing and athletic endeavors that were so much a part of my life? At one point, I was being treated as many as four times a day. The time and financial expense of these treatments was far beyond onerous.
Today, three long years later, with a new pulmonologist, I live free of medications while doing everything possible to protect my lungs from further deterioration. I am once again able to bike competitively….I cannot compete at the level I once did…. but I never come in last!
In March of 2011, the dream of an Alpha 1 Village began. I was visiting my pulmonologist and the results of my lung testing indicated unchanged and possibly improved lung condition. Mentally, I was coming to terms with my diagnosis and overcoming a myriad of physical and emotional struggles that had developed over the past three years. At this appointment, my pulmonologist suggested that I become a “poster child” for early detection of this genetic disorder. I thought, “Sure, I’m in!”
With encouragement from my pulmonologist, I began to envision the reality of an Alpha-1 Village Foundation. Through the creation of the Foundation, my goal was to increase awareness of this disease among medical and civilian populations. Ultimately, it is my goal to create a mountain village where Alpha-1 sufferers can find relief from the relentless suffering they endure in humid and polluted environments. Ideally the Village will be staffed with medical and support staff to meet the physical and emotional needs of Alpha-1 patients.
Today, the Alpha-1 Village is incorporated in the state of North Carolina as a non-profit corporation. The Department of Revenue awarded the foundation 501(3)c status on September 21, 2011.
The Alpha-1 Village Foundation exists to support and increase awareness for individuals afflicted with Alpha-1 antitrypsin deficiency. The Foundation will increase awareness of the disease in the public and medical domain, provide educational, counseling and physical support for patients and we hope to ultimately provide a Village facility for the treatment and relief of Alpha-1 sufferers.