It’s not what’s there. It’s what isn’t there.
Carol Logan displays some of the information she has compiled on Alpha-1.
Some people in the United States have a hereditary condition called Alpha-1 Antitrypsin Deficiency (Alpha-1). Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin, or the alpha-1 protein. The protein, mainly produced by the liver, serves to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke.
Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. Only about 10,000 people in the United States have been diagnosed with Alpha-1, but it is estimated that at least 100,000 people in the U.S. have Alpha-1 but are going undiagnosed.
Carol Logan has been diagnosed with Alpha-1. The Port Charlotte, Florida resident has been dealing with it for 20 years. The diagnosis is fairly simple — a blood test can unmask it. It requires a doctor’s prescription, but it is typically covered by insurance. The treatment — known as augmentation therapy — won’t cure the disease, but it will keep it from getting worse. Her husband, Larry, has been administering the medicine for close to two decades.
"My two sisters died in their 30s — one in 1982 and one in 1987 — before augmentation therapy was available. I was diagnosed when they were sick, so I had an advantage of knowing of the disease before I became affected.”
Logan, 71, is a leader for the Florida Gulf Coast Alpha-1 Support Group, one of more than 80 groups nationwide.
She wants to get the word out to people with chronic obstructive pulmonary disease (COPD), asthma, or chronic bronchitis to get tested. Testing can be done confidentially through the Alpha-1 Foundation.
The state of Florida also offers a free testing service.
It’s important, Logan said, because if you are a carrier and don’t know it, you could unwittingly pass it on to your children. Both parents must have the abnormal gene to pass on the condition.
“I’d like to raise the awareness of medical people to test every person they treat who has COPD, asthma or chronic bronchitis,” Logan said. “One of the big things people need to do is be their own advocate. If you want to get tested, insist on getting tested.”
Logan’s territory for the support group covers Tampa to Naples. It meets quarterly, usually somewhere in between Sarasota or North Port. Logan said she will get 25 to 30 people at her meetings.
It so happens that Feb. 29 has been designated Rare Disease Day — an extra day to get the word out.
For more information on the support meetings, email firstname.lastname@example.org. For more general information, go to www.alpha1.org.
To read a previous story on our website about Carol Logan, click here.
Source: Charlotte Sun