Transcript
Speaker 1:
We know that children develop asthma after they've had early life, respiratory illnesses. We don't understand how that happens. This is a tremendously ambitious study in Puerto Rico. We're going to recruit 3000 women in pregnancy. We're going to be there at the birth of their child. We'll follow them until age five.
Speaker 3:
Keep going. Keep going. Keep going.
Hannah Wiberg:
I am 22 years old. I have cystic fibrosis. I always wanted to get married and have kids. Then once I started to get sicker, it started to look less and less like a reality.
Martin Block:
I was pretty much bedridden. Most days I'm gasping. I don't know long this is going to last. I'm realizing if I was to call 911 right now, they might not get here in time to save me, if I stop breathing.
Sydney Charron:
I get a burger with no bun and I eat it, and my mouth immediately got itchy and I'm thinking, "I'm having an allergic reaction." We finish our meals. I feel my throat swelling again, and I tell my mom and she takes my EpiPen out and stabs me in the thigh, and we take a taxi to the nearest hospital.
Bill Charron:
It was like Sydney was allergic to the world. It was not just food that was setting her off. Pain would cause it. Stress would cause it. It didn't seem to have any rhyme or reason to it, and suddenly this situation was totally out of our control. All we could do is be afraid of it.
Deb Charron:
I think our world became very small.
Bill Charron:
There gets to be a point when the house itself feels like a prison.
Sydney Charron:
I'm stopping interacting with my friends. I didn't want to have to go and eat dinner at somebody else's house and be away from those safe foods. I was afraid that if I eat new foods, I would die.
Deb Charron:
So, we went to National Jewish Health in Denver.
Hannah Wiberg:
Cystic fibrosis, it affected every single piece of my life. In my own house, I was scared to go up the stairs. From June to August, my breathing capacity dropped almost in half, going from 65% to 35%.
Jennifer Taylor-Cousar:
She had gone down so low in terms of her lung function that we had to refer her for a lung transplant evaluation.
Lauren Joy Lee:
He was having more and more off days. We wouldn't even see him. He'd be in the room. A lot of wheezing. There'd be a lot of coughing. There'd be a lot of moaning, but it was definitely a struggle.
Martin Block:
There were some near-death experiences. It certainly, that's what they felt like to me.
Anthony Gerber:
Martin has asthma and COPD. Without controlling that, you wouldn't have been a good candidate for the surgery.
John Mitchell:
It seems paradoxical that you could take someone with bad lungs, go in and take out part of each lung and actually help them breathe better. But in fact, that's what happens in properly selected patients.
Anthony Gerber:
The net trial, so this was a big deal. We were a major site for it, really defined that right set of patients to do this procedure on. To be able to pick that you were the right patient and to have the surgeon do such a great job and see how amazing you look, I mean, it is truly transformational.
Michael Wechsler:
We've come a long way in the management of asthma, but there's still 2 million emergency room visits for asthma every year, and over 3000 people die from asthma every year in the United States. So, we still have to do a better job.
Max Seibold:
In the end, we're studying human diseases, and the first thing that you want to do is go to that human population and obtain samples from those subjects and see what's different between their airway and someone that's healthy. Puerto Rico is a population in need. They have among the highest asthma rates in the country and in the world. They have the highest mortality due to asthma.
Jose Rodriguez-Santana:
They are not born with asthma. They are born with the predisposition. Is an opportunity to have collaboration with big people in centers like Metro and Jewish Health.
Max Seibold:
This study is going to give us one of the first glimpses into those early life factors behind someone developing asthma.
Speaker 1:
Max Seibold's group pioneered the study of viral gene expression and now that technique is being replicated across the country, across the world.
Hannah Wiberg:
National Jewish, they're amazing. They've helped me through the hardest experience in my life. Everybody has just kept me positive and fought for new drugs and meds and helped me find things. They never got stuck.
Jennifer Taylor-Cousar:
National Jewish Health has by far, the largest adult CF program in the country. We're doing over 30 research studies and we're really, really seeing a difference in what we can do for people with CF. Hannah's been on the medication for about two months and now because her lung function is so much better and she no longer needs a transplant, she can actually probably have a baby on her own some day.
Hannah Wiberg:
THat would be amazing, because I've always wanted to have kids. I'm like, "This is what life is like?" I feel like I'm a free bird right now.
Lauren Joy Lee:
After this operation, he really did reclaim a quality of life that he hadn't experienced for years.
Martin Block:
When I originally moved here, I got myself a handicapped placard, which I used all the time. Since the procedure, I still have that in my car, but more often than not when I'm in a parking lot. I can't bring myself to use it. I don't want to waste, I don't want to use a handicap spot when I don't need it.
Bill Charron:
What National Jewish Health did, was take her and us and her symptoms and professionally, methodically, sensitively, take it one by one to try to solve each problem, one at a time.
Sydney Charron:
I went on a bike and I worked out for a while. Then they found that the throat tightening feeling is real, but it's not life-threatening.
Pia Hauk:
It was a complicated case, but we were able to peel the layers off. We found that uncontrolled asthma reflux, vocal cord dysfunction, and anxiety all contributed to her symptoms. By managing all of these individual components, we could make her feel better.
Deb Charron:
Just knowing her life actually isn't in danger was so freeing.
Bill Charron:
We are so grateful for what they did. It was just an unbelievable stewardship through a very, very murky place.
Deb Charron:
I mean, I think we were walking on air. It felt like the doors were opening again for us.
Bill Charron:
We go out to restaurants. We're back on family vacations. She's out there living life again, and she's happy. I can very heartily say, "Thank you National Jewish."
Hannah Wiberg:
National Jewish Health.
Sydney Charron:
National Jewish Health, breathing science is life.
Max Seibold:
Breathing science is life.
Martin Block:
At National Jewish Health, breathing science is life.
