Hi, my name is Deanna Patrick and I would like to introduce myself as your AlphaNet Coordinator.
I grew up in Sarnia, Ontario, Canada but now live in Port Huron, Michigan with my two children, who are Alpha-1 carriers. I was diagnosed with Alpha-1 when I was one-and-a-half-years-old when my sister began having problems with her liver; she was three-months-old. When doctors proceeded to test the rest of my family, it turned out that my sister and I were ZZ Alphas while the rest of my family—both my parents and two older brothers—were only carriers.
Being diagnosed so early in life has been a blessing since it has allowed me to become more aware of things that I should stay away from and focus on being as healthy as possible. It was difficult in those early years as there was not much information on Alpha-1 Antitrypsin Deficiency, but my family and I managed as best we could.
I was diagnosed in December 2001 with the early onset of emphysema, never having smoked a day in my life. However, my pulmonary specialist at that time was not aware of any treatments, so it wasn’t until 2010 that I began receiving augmentation therapy. I lost my sister in January 2014 to cirrhosis due to Alpha 1; she was only 40. I know the pain, anguish, and confusion involved with this deficiency and long to share and help others going through the same situation and circumstances. It has been a great inspiration for me to openly talk and share my experiences and feelings with other Alphas. I find it comforting to speak with people who are familiar with, and understand some of the obstacles that we, as Alphas, sometimes face. I try and attend our regular Alpha-1 support group meetings in Michigan and highly recommend them to other Alphas, as I find they help offer much needed guidance and support.
I am a very caring and compassionate individual. I desire to support and assist other Alphas from being overwhelmed and scared, help them learn to cope and live with this condition and become more aware of all the resources of information available to them.