For five years of her life, Dawn McAllister Lindgron has been a prisoner. She is shackled in her own home by a clear plastic tube and boxed in by the air outside her windows and doors.
“Alphas can’t do cold weather, nor can we do hot and humid weather, so that leaves me as of last year with the summer we had with a very narrow time to do anything,” she said. “You feel like you are a recluse by the time you are at the place where I am now.”
Dawn has Alpha-1 Antitrypsin Deficiency (A1AD). Her liver does not produce the Alpha-1 Antitrypsin (A1AT) enzyme properly. As a result, when she gets sick, her immune system first destroys the infection, then it destroys her lungs.
Dawn was diagnosed after collapsing while working with the Backus Cornfest committee. This was five years ago, but Dawn has had the disease all her life. Shortly after being diagnosed on Memorial Day 2008, her doctors gave her a prognosis of three to five years to live. Infusions of A1AT, exercise, oxygen tanks and probiotics helped Dawn to beat that prediction, but they are only buying time. Dawn needs new lungs.
Dawn’s sister, Rae Borst, is her best friend. When Dawn was diagnosed they became closer than ever. Rae gives Dawn infusions as well as anything else she needs, but when Dawn’s doctors suggested that she should get a double lung transplant, Rae assumed responsibility for making sure Dawn got the chance.
“Parts of it are really, really hard for me. My mind does not accept that I’m the oldest and my younger sister could die before me. My heart does not accept it,” Rae said. “We are going to do everything possible we can do to cure this. It doesn’t mean that I don’t realize it or that I don’t accept what’s happening. It’s just that I’m not going to give up hope.”
Organ donations are finite. To qualify for one you must meet strict requirements concerning health, lifestyle and will power. Being tested for all these things, in addition to surgery for such a transplant, is very expensive. More expensive than anything Dawn could afford, so Rae started a benefit.
On Saturday, March 9, at Emmanuel Lutheran Church of Backus there will be a spaghetti dinner and silent auction benefit to raise funds for Dawn’s testing. The benefit is also a chance for Dawn to increase awareness for A1AD.
“Early detection is the best thing. For my grandkids, now we know,” Dawn said. “A simple test can make all the difference. It’s awareness, and I want people to be aware.”
A1AD is genetic, and most common among people with Scandanavian bloodlines. Though it is often misdiagnosed, testing for the disease is easy, requiring only two drops of blood.
A1AD can cause scar tissue in the lungs and cirrhosis of the liver. It is sometimes misdiagnosed as allergies, chronic obstructive pulmonary disease and emphysema. The disease is believed to be under diagnosed. According to the Alpha-1 Association, approximately 100,000 people in the United States are estimated to have A1AD, though they are not all diagnosed with it.
Because A1AD is genetic, it is sometimes possible to diagnose the disease using a family history. If your family has a history of lung infections, pneumonia, bronchitis or even cirrhosis, then it is advisable that you talk to your doctor about A1AD. This is especially true if these symptoms are found in family members who do not smoke or drink, as past A1AD patients have sometimes been mistaken for closet drinkers.
A1AD does not always show symptoms, as there are many variants of the disease. Some of them increase a person’s risk for serious lung or liver disease, some only increase the risk of spreading A1AD to future generations, but show no symptoms. Members of this second group are called carriers.
Dawn and Rae both have A1AD. Their sister, Janice, and younger brother, Brian, are carriers, while their other brother, Kelly, does not have the disease at all. Dawn’s son, Adam Ericson, is also a carrier.
For more information about A1AD, visit alpha-1.org. Those without A1AD can also lend a hand by donating blood or registering as an organ donor and discussing it with their family members.