Alphas listen to speakers during the National Education Conference.
Dr. Charlie Strange greets Alphas during the National Education Conference.
Dr. Robert Sandhaus greets Alphas during the National Education Conference.
A young adult Alphas group meets during the National Education Conference.
A panel of liver experts speaks during the National Education Conference.
Dr. Richard Casaburi speaks during the National Education Conference.
Genetic counselor Kim Brown speaks during the National Education Conference.
Alpha-1 Project director Jean-Marc Quach talks with Dr. Robert Sandhaus.
A Marilyn Monroe impersonator entertains Alphas during closing ceremonies.
Alpha-1 Foundation co-founder, president and CEO John Walsh speaks during the closing ceremonies of the 2015 Alpha-1 National Education Conference.
I photographed the 24th annual Alpha-1 National Education Conference at the Hyatt Regency Orange County in Anaheim, California on July 24-26, 2015.
Alpha-1 antitrypsin deficiency is a genetic condition in which the body does not make enough of a protein that protects the lungs and liver from severe damage. The condition can lead to emphysema and liver disease, often before age 40.
Symptoms of Alpha-1 lung disease include shortness of breath, chronic obstructive pulmonary disease (COPD) and wheezing. There is no cure for Alpha-1 and the only treatment is a weekly IV infusion of the missing alpha-1 antitrypsin protein.
Augmentation therapy has been shown to reduce the rate of declining lung function, however it is not a treatment for Alpha-1 liver disease.
Instead, health care practitioners concentrate on treating the symptoms of Alpha-1 liver disease by instructing patients to get regular blood and liver tests. Patients are also advised to avoid smoking and alcohol, as well as eating a balanced diet, exercising, and maintaining a healthy weight. If an Alpha-1 patient develops severe scarring of the liver (or cirrhosis), a liver transplant is usually their only option.
Despite the grim diagnosis of Alpha-1, the patients, the families, the physicians and the administrative staff at the conference were warm and outgoing people.
More than 500 people attended the conference. Several speakers, including pulmonary specialists, professors of medicine, genetic researchers, internists, gastroenterologists, physiologists and pharmaceutical reps spoke about the latest medical trials, breakthroughs and treatments available to Alpha-1 patients.