One Sunday morning, three years ago, Janice McAllister from Corona California was in Church. This was a typical Sunday. However, during service, her son fell over in pain. His lung collapsed. He was rushed to the hospital and the doctors had a hard time determining what it was. He was checked for "Bleb Disease" - a lung disease that affects tall skinny white males and females between the ages of 25 & 40 years old. Eventually, it was concluded that he had spontaneous pneumothorax, which is the collection of air in the space around the lungs that builds up and puts pressure on the lung, so it cannot expand as much as it normally does when you take a breath.
During the rounds of testing, he was also tested by a group of young Pulmonologists using a simple blood test as having a type of hereditary lung disease known as Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare genetic condition that can cause life-threatening liver disease in children, and can also lead to severe liver and lung disease in adults. He was diagnosed as having it and was then quickly sent to a Geneticist for more information. Afterward, members of his family, which had a history of Asthma and Chronic Obstructive Pulmonary Disease (COPD) were tested. Many soon became diagnosed as well.
According to McAllister, "Now that I know that Alpha-1 runs in my family, I realize how incredibly special the lungs are. I keep my kids away from raging bonfires at both the beach and at Boy Scouts. I am also careful when gardening around dirt. As it takes an average of three doctors and seven years from the time lung symptoms first appear before proper diagnosis is made, I make it a point to spread awareness about Alpha-1 on Facebook daily. For those that are newly diagnosed, keep healthy and read all the literature you can. I also became a member of the Alpha-1 Association. I am a member so I can further be plugged in and help give people the answers they need so they can feel that they are not alone."
If you have a story to tell or if you have created awareness by writing a letter, getting a proclamation, talking to a family member, sharing a button, spreading the word on Facebook or other, please e-mail Jonathan Welsh, Advocacy/Communications Manager at: firstname.lastname@example.org so both you and your efforts can be highlighted.