Hello! My name is Siobhan (Shi-von) Lestina and I am AlphaNet’s REACH Coordinator. REACH is AlphaNet’s program for severely affected Alphas who are not currently on augmentation therapy. I grew up in Northern Ireland but now call Missouri my home, where I live with my husband, my two children, and my fur baby who is a Great Pyrenees. I enjoy spending time with my family, baking, watching movies, reading, and traveling. I studied in Scotland for four years and I try to visit Ireland and Scotland whenever possible.
I was diagnosed with Alpha-1 in 2010 at the age of 35. Up until this point, I had been told I had asthma my entire life and I assumed my breathing difficulties were due to the asthma being uncontrolled. In my 30’s, my breathing took a turn for the worse, and after years of tests which provided no answers, I found a doctor who recognized the symptoms. She tested me for Alpha-1 and I finally had my answer. I was a ZZ Alpha.
I did not take the news of my diagnosis well and it took me two years to come to terms with it. My AlphaNet Coordinator gave me the answers I was looking for and talking to another Alpha who understood what I was going through was the breakthrough I needed. My Coordinator provided me with the information I needed to help me take control of my condition and helped me understand that with some lifestyle changes, I could still have a great life. Instead of continuing to be depressed about my situation, I decided to view this as a new chapter in my life, and I try to make the most of every day.
I am happy that, as the REACH Coordinator, I can pay this generosity forward and help other Alphas who may feel as I once felt. I am here to help, educate, and most importantly, listen. I am here for you.
Are you an Alpha not on augmentation therapy, a liver-affected Alpha, or the parent of an Alpha child? If so, you may qualify for the REACH program, AlphaNet’s free and voluntary enrollment program specifically focused on maintaining the health of Alphas whose current status does not require advanced treatments such as augmentation therapy. For more information on the AlphaNet REACH program, visit https://www.alphanet.org/community/why-join-alphanet.