We proudly welcomed Len to our team of Rare Storytellers in 2015 after meeting Len at the very very first Global Genes Patient Summit in 2012. We were captivated by his story and we know you will be too.

Len Geiger was diagnosed with Alpha-1 antitrypsin deficiency in 1994 and has been involved in the Alpha-1 community ever since.

Alpha-1 antitrypsin deficiency is an inherited disorder that may cause lung disease and liver disease. The signs and symptoms of the condition and the age at which they appear vary among individuals.

People with alpha-1 antitrypsin deficiency usually develop the first signs and symptoms of lung disease between ages 20 and 50. The earliest symptoms are shortness of breath following mild activity, reduced ability to exercise, and wheezing. Other signs and symptoms can include unintentional weight loss, recurring respiratory infections, fatigue, and rapid heartbeat upon standing. Affected individuals often develop emphysema, which is a lung disease caused by damage to the small air sacs in the lungs (alveoli). Characteristic features of emphysema include difficulty breathing, a hacking cough, and a barrel-shaped chest. Smoking or exposure to tobacco smoke accelerates the appearance of emphysema symptoms and damage to the lungs. About 10 percent of infants with alpha-1 antitrypsin deficiency develop liver disease, which often causes yellowing of the skin and whites of the eyes (jaundice). Approximately 15 percent of adults with alpha-1 antitrypsin deficiency develop liver damage (cirrhosis) due to the formation of scar tissue in the liver. Signs of cirrhosis include a swollen abdomen, swollen feet or legs, and jaundice. Individuals with alpha-1 antitrypsin deficiency are also at risk of developing a type of liver cancer called hepatocellular carcinoma. In rare cases, people with alpha-1 antitrypsin deficiency develop a skin condition called panniculitis, which is characterized by hardened skin with painful lumps or patches. Panniculitis varies in severity and can occur at any age.

Len received a life-saving double lung transplant in 2002. Since then, Len has been featured in Runner’s World magazine and Sports Illustrated as well as a number of other newspaper articles and publications. Having been a guest or subject of documentaries on CNN, the Today Show, the Discovery Health Channel, HBO’s “Real Sports with Bryant Gumbal”, ABC's "World News Tonight with Charles Gibson" and most recently PBS’s “Healthy Body, Healthy Mind”, Len continues to raise awareness for Alpha-1 and the importance of early detection and treatment.

As an Alpha-1 advocate and national speaker, Len maintains his commitment to increasing the public’s understanding of Alpha-1 and serves as a resource for medical professionals, newly diagnosed patients and their families.

Len lives in Jacksonville, FL with his wife, Christina, and daughter, Ava Corinne.