"Alpha-1 Antitrypsin Deficiency (Alpha-1) is an inherited condition. People with Alpha-1 have received two abnormal alpha-1 antitrypsin genes, one each from their mother and father. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. Alpha-1 affects approximately 1 in 2,000 to 1 in 5,000 individuals but it is often misdiagnosed or incompletely diagnosed because the initial symptoms seem like other conditions, such as asthma or chronic obstructive pulmonary disease (COPD). There is no cure for Alpha-1, but once diagnosed by a blood test, there are several treatment options."
The World Health Organization (WHO) and the American Thoracic Society (ATS) recommend Alpha-1 testing for anyone with COPD, emphysema, chronic bronchitis, uncontrolled asthma, unexplained liver disease (including children), or panniculitis.
New Excursions section:
All New England Alphas and their circles of loved ones are invited to share: support group schedules and other info, featured events, Alpha-1 stories, exercise routines, handy tips, photos, recommended articles, personal writings, poems, jokes, and anything else I've missed.
Alpha groups beyond New England are welcome to send their website address for our Links page. My email address is email@example.com. Looking forward to years and years of service.
On a personal note, I've been way pleased with my infusions over at Newport Hospital. Sam Evans, my pulmonologist, is everything I hoped for in a specialist - keen intelligence and patient-centered "like the old days". Everyone on the staff at the Infusion Center has been wonderful. They're knowledgeable, efficient, and caring. I've told them that it's their heart, their love that keeps me going. One of the nurses has a son the same age as my grandson. It's fun to compare photos and stories. I've been making paracord bracelets for the staff and other infusion patients, taking a bag of bracelets in every week. All the extra clippings from the bracelets are already going to our two 6 year olds. Bracelets celebrating the winter holiday season are donated to the Dr. Martin Luther King Jr. Community Center in Newport.