On May 1, 2018, – World Asthma Day – the Asthma and Allergy Foundation of America (AAFA) released the Asthma Capitals™ 2018 report. This report ranks the top 100 Asthma Capitals in the U.S. It highlights the widespread impact asthma has on our nation. For 25 million Americans, asthma is a challenging disease that can have physical, emotional, social and financial impacts. During National Asthma and Allergy Awareness Month, we will share personal stories from our top 20 capitals to show what life is like managing asthma.
#16 Asthma Capital: Detroit, Michigan
Shari Duncan has had asthma for more than three decades. In recent years it has become quite severe. Shari takes daily asthma maintenance medicines, does nebulizer breathing treatments and works hard to avoid her biggest asthma triggers. She also uses her quick-relief inhaler about once or twice a week. In spite of these efforts, four to six times a year Shari is hospitalized for asthma.
Shari’s description of one of her most recent hospital stays illustrates why asthma is so frightening.
“They gave me steroids through the I.V.,” Shari recalls. “I couldn’t breathe. Couldn’t get it together. You’re trying to get that air back in you, and it’s like something is blocking it. It’s like a truck is on your chest, and you’re really fighting to do it but it’s just not happening. It’s very scary. Because when you can’t breathe, nothing else matters.”
The “Asthma Family”
For the Duncans, asthma has always been a family affair. “It’s an epidemic in my family!” Shari exclaims. All six of her children, who range in age from 17 to 40, have asthma. Shari’s mother and her two grandchildren have asthma. And many members of her extended family have asthma as well.
Today most of Shari’s children are adults and on their own. But there was a point when managing everyone’s asthma was very complicated. “There were over 40 meds and often 20 breathing treatments a day,” Shari says. “Sometimes me and two or three of the kids were in the emergency room at the same time. Every day was a challenge.”
As a working mom, Shari would often get up at 5 a.m. just to make sure everyone got their medicines and used their nebulizers. At night, Shari says, she and her late husband “would go around to each kid in their bed, listen to see if they were wheezing and touch them to make sure they were breathing.”
Needless to say, the challenges of managing everyone’s asthma, and all of the worry associated with that, was very, very stressful.
Eventually, the Duncans decided to share their story to help educate others about asthma.
“We became known as the ‘Asthma Family,’” Share relates. “We traveled around Michigan doing speaking engagements, walks and fairs. It helped us grow as a family to get other families to realize this is a serious disease.”
Difficulty Finding Specialists
Living in Southfield, Michigan, about 5 miles from the edge of Detroit, one of the problems Shari faces is that there are very few allergists in the area who treat adults. “I see a pulmonologist,” Shari says, “not an asthma/allergy specialist. The specialists are hard to find in Michigan. And if you do, it’s months before you can see them.”
Combining Asthma With Heart Problems
On top of the asthma, Shari also has a history of congestive heart failure. When her asthma is bad, it puts a strain on her heart. This makes both conditions more difficult to deal with.
“The asthma is weakening my heart because I’m struggling to breathe,” Shari says. “I can’t exercise because of my asthma. Both my primary physician and my pulmonologist say don’t do it. I can walk a certain distance and then sometimes I have to sit down for air.”
Trying to Avoid Triggers
As is the case for many people with asthma, some of Shari’s asthma triggers are associated with where she lives.
For example, the air quality in Southwest Detroit, where there are many factories, is particularly bad. Shari tries to avoid the area completely because going there causes her and her children to have asthma attacks. But even in the rest of the city, there are many days when the poor air quality makes going outside difficult, especially during the summer.
Pollen is also a big asthma trigger for Shari.
“When the pollen gets to flying, I turn on the air conditioner and keep the windows closed,” Shari says. “Sometimes I have to miss work because I can’t step out the door. When the pollen gets really bad, I just don’t go out. Period.”
Wet weather can also be a problem for Shari.
“I’m paranoid to go out in wet weather,” she shares. “When there’s a cold rain, I have to come in and go on the nebulizer.”
Between the pollen and the weather, Shari finds her symptoms are worse in the fall. But that’s not necessarily the case for the rest of the Duncan family. Some of her kids are worse in summer, some in winter and some in spring. Her youngest daughter has severe problems year-round.
Paying for It All
Luckily, Shari has health insurance. Today, she doesn’t have any problems paying for the asthma medicines for her and her daughter. But back when there were co-pays for six kids, things were much more difficult. She had to arrange a payment plan in order to pay for all the asthma medicines. The cost of buying sheets and pillow cases specially made for those with asthma also added up.
Advice for Others
Shari says her greatest challenge has been the fear.
“I’ve had nieces and nephews who died from asthma,” Shari states. “It’s scary not knowing if you or your child will come across something that will activate their asthma.”
Her biggest advice for others who are managing asthma is to get educated about it. Research, research, research. Don’t be afraid to ask questions. Try to get into some kind of support group. And realize that you’ll have to work with the schools, your doctors, neighbors, your kids’ friends, etc.
“A lot of people have kids that are asthmatics,” Shari notes, “but they aren’t real educated about it. People need to know the truth that asthma kills. You can die from this. You must take it seriously!”
The Asthma Capitals™ 2018 report is an independent research and education project of the Asthma and Allergy Foundation of America made possible with support from Sanofi Genzyme and Regeneron.