Most people haven’t heard of Alpha-1 and it is a commonly misdiagnosed condition, whose symptoms mimic common ailments like bronchitis, asthma, and reoccurring pneumonia. But it’s estimated that about 1 in every 2,500 Americans has Alpha-1. But the Strickly Alphas support group is working to raise awareness and advocate for those effected by Alpha-1.
Alpha-1 is a hereditary condition that is passed on from parents to their children genetically, and can result in serious lung disease in adults and/or liver disease in infants, children and adults.
Alpha-1 occurs when there is a severe lack of a protein called alpha-1 antitrypsin (ATT) that is mainly produced by the liver. The main function of AAT is to protect the lungs from infections and irritates like tobacco smoke. If the AAT protein is not formed correctly, it cannot be released from the liver at the normal rate, thus leading to liver disease.
The Strickly Alphas support group formed after Jesse Strickland, the groups founder, was diagnosed at age 52.
“I didn’t know anything about it, I’d never heard of it,” explained Strickland. “I started learning everything that I could. I formed the support group so I could help other people who have Alpha-1.”
Last year, Representative Terry Johnson introduced House Bill 29 which designates November as “Alpha-1 Antitrypsin Deficiency Awareness Month.” HB 29 was passed unanimously by the Ohio House and Senate and was made effective on September 24 of 2015.
Strickland has stepped back from his leadership role, but continues to work to help those with Alpha-1. He works as coordinator for Alpha-Net, an organization that assists patients and families with support, education and strategies to manage health.
The group is now co-lead by Amanda Holsinger and Ann Dissinger, who are also effected by Alpha-1. The group typically meets every three months at the Ponderosa Steakhouse in Wheelersburg. The next meeting will take place December 8 from 6-8 p.m.
The group will be hosting their Second Annual River Walk on October 22 in order to raise awareness and help find a cure for the condition and honor members Kevin Kennedy, Freda Hardin, and in memory of Dan Kirby.
Kennedy was diagnosed with Alpha-1 in 2010, and it contributed to the cirrhosis of his liver. After being on the transplant list for 17-months, Kennedy received his liver on June 12 of 2015.
Haridn was absent from the walk last year, because she was at the University of Kentucky, receiving a life-changing lung transplant.
“It’s truly changed my life,” Hardin explained. “I couldn’t do anything. I couldn’t leave my house, and even if I got up and walked around, I never felt like I could catch my breath. I was on oxygen, all the time. Now, I’m able to live my life, I can go out and do things, and I’m not on oxygen, I’ll have to have treatment and take medications for the rest of my life, but I finally feel like I can breath again.”
But one member of the group, Dan Kirby lost his battle with Alpha-1, in 2014, to liver cirrhosis at age 72. Due to Alpha-1 Kirby was diagnosed with non-alcoholic cirrhosis of the liver, just a year and a half after being diagnosed with Alpha-1.
“His diagnosis really changed our family,” explained his wife, Ann Kirby. “He was diagnosed, and he didn’t get a chance to be put on the transplant list, because it can take years to get a liver and by then he would be too old. I was in denial, I think. It just changed the way we lived, we had to go to the doctors appointments and I just saw him go down. He couldn’t do the things he normally did. He was really active, and he was a private pilot, he loved to fly. He just couldn’t do things like that anymore. In a way, we were glad that he had a diagnosis, and he wanted all the kids to be testing, and they were. They could be carriers for it, and it’s just takes a simple blood test to find out.”
Common signs and symptoms of Alpha-1 are:
- Shortness of breath
- Chronic cough and phlegm production (chronic bronchitis)
- Recurring chest colds
- Decreased exercise tolerance
- Non-responsive asthma or year-round allergies
- Unexplained liver disease or elevated liver enzymes
- Yellowed eyes and skin (jaundice)
- Swelling of the abdomen
The walk was originally slotted to begin at the First Presbyterian Fellowship building, but will now begin at the St. Mary’s Church, St. Mary Center, located at 514 Market Street in Portsmouth.
Registration will take place at 11 a.m. along with a silent auction, live entertainment, snacks and refreshments. The walk itself will begin at noon. Those who pre-register by October 1 will receive a t-shirt. Registration is $25, and can done online by visiting www.virtualwalk2016.kintera.org/stricklyalphas
For more information, please contact co-leader Amanda Holsinger at 740-858-0405 or Ann Dissinger at 740-357-8843. You can also email [email protected], or find them on Facebook by searching “Strickly Alphas.”
Reach Ciara Conley at 740-981-6977, Facebook “Ciara Conley - Daily Times,” and Twitter @PDT_Ciara.