Bonnie Lee

Hello, my name is Bonnie Lee, and I would like to introduce myself as your AlphaNet Coordinator.

I live in Anchorage, Alaska—not far from the little fishing village in Prince William Sound where I was born.   I had enthusiastically always lived the Alaska lifestyle: flying, fishing, hiking, climbing, skiing and kayaking, so when an X-ray in 2006 revealed advanced emphysema, I insisted that the lab had made a mistake.  I had no symptoms and felt great.  Knowing that I had never smoked nor lived around environmental pollutants, my physician ordered some additional tests and discovered that I had Alpha-1 Antitrypsin Deficiency.  She told me: “They said in medical school that we’d probably never see a case of Alpha-1.”  And so began an educational process for both my physician and I, as we learned about this disorder.

I began augmentation therapy in 2007 and have been able to maintain my very active Alaska lifestyle.  I cannot imagine how I would have managed without the help of AlphaNet and my Coordinator.  I feel so fortunate to have the support of both my medical and AlphaNet families.

A diagnosis of Alpha-1 can bring a mix of many emotions, concerns and even fear.  The AlphaNet program has been designed to assist you in addressing all of your questions and concerns, and I am hoping I can be of help as you navigate the medical, emotional and financial issues that you face.  I encourage you to learn all you can and to take a very proactive part in your care.  As your AlphaNet Coordinator, I will be here to assist you in any way that I can and to help you find all the resources available to you.