Alpha-1 Antitrypsin Deficiency affecting people without them knowing

Mishawaka, Ind. If you or someone you love has asthma or bouts with chronic bronchitis or unexplained liver disease you might want to be tested for an uncommon deficiency. Alpha-1 Deficiency strikes one in 2,500 people and there is no cure.

In fact, many people are misdiagnosed with asthma and COPD, and without treatment the organs eventually quit working. And without a diagnosis grieving family members are left asking, why?

In a special Medical Moment Just Before Six one Michiana man’s family has been affected by Alpha-1 and is walking this weekend, along with hundreds of others, to get the word out about this inherited disease.

Terry Nickerson's garage door is a tribute to his favorite football team in the world, Notre Dame. Two family members are grads and his aunt worked for the university. He has been going to watch his beloved Irish in the house that Rockne built faithfully for 45 years.

“They got to know me, all the ushers they say here comes Terry,” says Terry. “I really love it.”

And while Terry and his wife Joann still enjoy Notre Dame games, their lives are far from the average retired couple.

“It has been a challenge but a good challenge, we will make it,” says Joann.

Terry who was born with cerebral palsy, found out six years ago, at the age of 60, that he had an inherited and often fatal disease called Alpha-1 Antitrypsin Deficiency. His parents, unknown to all, were both carriers.

“What it is there is no protein coming up from your liver through your body and it destroys your lungs and your liver and if not treated it will be fatal,” explains Terry.

Terry's lung capacity is now at just 56 percent. When he gets to the forty percent range he will need oxygen and while he can be put on a list for a lung or liver transplant doctors do not suggest it because the gene already in his body would start attacking the new organs.

He knew something was wrong but he had no idea he had inherited such a deadly disease.

“I worked in construction for 34 years but I was out of breathe and I was wheezing and coughing and I tried to go around the block here and I could not even go around the block,” explains Terry.

The family doctor told Terry he had asthma and was put on medication and inhalers but with each month he kept getting worse. And then on vacation he met a woman from the Cleveland Clinic who told him she suspected he had Alpha-1. She got him an appointment in Cleveland to have a blood test.

“Through the blood work I found out I had this Alpha-1 disease,” says Terry. “They say anyone with asthma or emphysema now has to be tested.”

Terry still struggles with everyday activities, but tries to walk each day and once a week he goes to Saint Joseph Regional Medical Center where he is infused with a drug called Prolastin, proteins his body will not make.

“I go in on Thursday every week it goes out, and then they have to replace it,” says Terry. “They have got to do that because like I said it will destroy the lungs and the liver.”

He's become so close to two of his nurses, Lisa and Julie, that they took an Elvis Presley song, "Lord you gave me a mountain" and adapted it and made a CD it for Terry. A gift he shared with us and brings him to tears.
A mountain his cousin faced three years ago, not knowing he had the disease until it was too late.

“They rushed him to Indianapolis because he got so bad but they opened him up and he was too far gone, so he died,” explains Terry.

Terry is now worried about his four grandchildren. Both his kids are carriers, so if a spouse is, the kids will need to be tested.

And that's why he is pushing awareness with an Alpha-1 Walk Saturday morning at Beutter Park in Mishawaka. He hopes you and your family will come and walk to and learn more, because sadly many have it and don't know it.

“I would encourage them to come out and walk and support us because it is out there and anyone who thinks they have asthma or emphysema or liver problems or lung problems, get tested immediately,” says Terry. “There is no cure now but we are going to beat this and I have not climbed that mountain yet but I'm going to get there.”

A mountain he hopes you will help him climb Saturday morning.

A simple blood test can detect Alpha-1 and if your doctor does not do it you can send for a free test kit from the Medical University of South Carolina.

The Walk for a Cure for Alpha-1 is this Saturday at Beutter Park on the riverfront in Mishawaka. It is $25 and in addition to helping find a cure you will get a free t-shirt and there will be raffles for gift baskets and entertainment.

The walk starts at 10 a.m. and you can register on line or just show up at Beutter Park an hour early to sign up.

For more information on the walk click on the Big Red Bar.


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