Tuesday, September 2, 2014

Healthy Sick - OutRunning Cystic Fibrosis: Interview with Elizabeth Shuman, LCSW

[Episode 89] Today’s episode of the social work podcast about Cystic Fibrosis, or CF. We’re looking at CF in two parts. In Part I we learn about this chronic, terminal illness. In Part II we learn about what social workers can do when working with people with CF.

Download MP3 [1:04:02]

There are about 30K people in the USA with CF, 75% of whom were diagnosed as babies, and half of whom are over the age of 18. CF is a genetic progressive chronic disease. People are born with it. The disease causes the body to produce thick and sticky mucous in the lungs and wreaks havoc on the digestive system, pancreas, bone density and other things. Because of this thick mucous in the lungs, people often describe having CF like breathing through a straw. This mucous leads to chronic lung infection, loss of lung functioning, and disability and death. In the 1980s children born with CF could expect to live until they were about 12 years old. The life expectancy for someone born with CF in 2014 is 38 years old. Treatment for CF includes daily medications, breathing treatments and chest physical therapy in the form of a mechanized vest that helps break up the mucus.  In some cases people with CF need lung transplants.

So, those are the stats. But what does it mean to live with CF, and what should social workers know about working with people with CF? I’m delighted to say that for today’s episode of the Social Work Podcast I found the ideal guest. Elizabeth Shuman is a licensed clinical social worker who works as at the Grove School in Madison, CT.  She also has CF. 

Download MP3 [1:04:02]


Hey there podcast listeners, Jonathan here. [sound of me breathing through a straw]. That sound? Me breathing through a straw. [sound of Liz coughing]. That sound? Today’s guest coughing. Hang in there – it will all make sense. Today’s episode of the social work podcast about Cystic Fibrosis, or CF. We’re looking at CF in two parts. In Part I we learn about this chronic, terminal illness. In Part II we learn about what social workers can do when working with people with CF.

So, you’ve probably heard of Cystic Fibrosis. But unless you know someone with CF, you probably don’t know a lot about it. Here’s a quick overview. There are about 30K people in the USA with CF, 75% of whom were diagnosed as babies, and half of whom are over the age of 18 (the importance of this number will become clear in a minute). CF is a genetic progressive chronic disease. People are born with it. The disease causes the body to produce thick and sticky mucous in the lungs and wreaks havoc on the digestive system, pancreas, bone density and other things. Because of this thick mucous in the lungs, people often describe having CF like breathing through a straw. This mucous leads to chronic lung infection, loss of lung functioning, and disability and death. In the 1980s children born with CF could expect to live until they were about 12 years old. The life expectancy for someone born with CF in 2014 is 38 years old. And that’s kind of amazing. Treatment for CF includes daily medications, breathing treatments and chest physical therapy in the form of a mechanized vest that helps break up the mucus.  In some cases people with CF need lung transplants.

So, those are the stats. But what does it mean to live with CF, and what should social workers know about working with people with CF? I’m delighted to say that for today’s episode of the Social Work Podcast I found the ideal guest. Elizabeth Shuman is a licensed clinical social worker who works as at the Grove School in Madison, CT.  She also has CF. You might have seen her profiled, with her friend Nicole Burke, on the Today show in June 2014 talking about the non-profit they started to raise awareness for CF, called Outrun 38. Members of Outrun38.org, and the wildly popular Facebook group – OutRUN the Odds, raise awareness for Cystic Fibrosis by running, biking, swimming and walking. OutRUN38 is a beautiful example of how one person can make all the difference in someone else's life.  Nicole started the group to support Liz during one of her hospitalizations for CF.  Initially, the goal was to get a few runner friends together to collectively run 3800 miles by Liz's 38 Birthday which was a couple months away.  Why would 38 such a big deal birthday for Liz? Because people with CF are not expected to live past 38. So, Nicole started the Facebook group Outrun the Odds, and 9 days later there were over 1,000 members and who had run over 3800 miles.  As of September 1, 2014, there were over 5,300 members who have logged enough miles to travel the earth 8x over. Liz will talk more about OutRun in the interview. 

In the first half of the interview, Liz talks about living with cystic fibrosis. In the second half, about 22 minutes in, Liz talks about what social workers should know. Even though Liz is talking about one specific chronic physical condition - CF – her recommendations apply to social work with people with a broad array of chronic physical AND mental illnesses. People with chronic conditions experience significant loss - not just big loss like the permanent physical disability, but losses that people without a chronic illness might not recognize as a loss, such as not being able to attend a party. As a result, grief work is an essential skill for social workers with these populations. She coins the term "healthy sick" to describe people, like herself, who are healthy enough to be productive and independent members of society as long as they are also able to manage the part of them that is sick. Liz points out that there is not really a place in society these days for the healthy sick. Employers, insurance companies, and even friends and family,  who would rather see the person as either healthy or sick, but not both. She is incredibly grateful to be employed with the Grove School because unlike other work environments, they support her in every way possible in her "healthy sick" CF journey. We talk about decisions that healthy sick people have to make before coming out to others about their condition. We end with a short discussion of running. It is a beautiful illustration of how people with conditions are the experts in their own conditions.

Before we get to Episode 89 of the Social Work Podcast, “Healthy Sick: OutRunning Cystic Fibrosis: Interview with Elizabeth Shuman, LCSW” I wanted to give a little historical context for CF.

It is summer of 1952. New York City is in the throes of yet another brutal heat wave. Over 40 people will of heat stroke – a record that will stand for another 60 years. The emergency rooms are swamped with people suffering from heat – related problems. A young physician at Columbia Presbyterian Medical Center, Dr. di Sant’Agnese notices something troubling about the children who are being admitted for heat stroke. Lots of them have cystic fibrosis, far more than he would expect given that CF is a rare disease. So why were kids with CF so much more affected by heat? Salt. Turns out, children with CF had sweat that was up to six times as salty as kids without CF. This discovery led to one of the most simple, accurate, and non-invasive medical diagnostic tests ever: the sweat test for diagnosing CF.  And that's where we begin our interview with Liz – with a Sweat Test.

Liz Shuman: So we actually produce too much salt, and that’s actually how they test us. It’s called the sweat test. And I can remember being about seven years old, and they put this band around my arm, and you’re like, your arms is getting all sweaty, and they actually measure the salt in your sweat. And if you’re over a certain amount, that is what qualifies you as having CF. Now they can actually test your blood type and actually find out what type of mutation you have, and there’s actually, like, hundreds of different types of mutations.

Jonathan Singer: So how does, sort of making too much salt translate into gunk in your lungs?

Liz Shuman:  I mean, this is sort of what they’re all trying to figure out, is—

Jonathan Singer: So people don’t really… know?

Liz Shuman: I mean, I think probably the experts really have it under control [Jonathan laughing], but it’s something around the protein in our lungs. But there’s still really a lot of questions as to why our lungs really do what we do. Because another big issue with our lungs is that we actually colonize bacterias in our lungs. So let’s say, you have pneumonia, or you get some sort of bug that causes you to have a hard time breathing. When you get better, your lungs will actually be done with that bug. It’s gone—you took your antibiotics, and you’re done. For a CF person, it actually colonizes and stays in our lungs. And so sometimes it’s active and sometimes it’s dormant. And sometimes, you know, you might be able to, with like, serious serious rounds of antibiotics maybe it’ll go away, but really it usually comes back. And so, part of the dilemma is not only do we have these bacterias that colonize in our lungs, but because we take so many antibiotics through the years we then become medication-resistant. So our bacterias—this is where it gets really scary—they become resistant to all antibiotics. And that’s really when we’re looking at lung transplant, um, you know, and really looking at CF becoming a fatal disease.

For example, my story is-- a couple of years ago, I became resistant to all oral antibiotics. So, when I used to get sick it was like, “Oh I can go on Cipro, I can go on Bactrim, whatever,” and two weeks—I’d be fine. Now it requires going in to the hospital, getting a PICC line, which is like a temporary IV, and for two weeks I’m doing round-the-clock IV treatments.

Jonathan Singer: And so why would [Liz coughs]—Are you clearing your lungs now?

Liz Shuman: [laughing] Yeah! Exactly.

Jonathan Singer: If I was interviewing somebody without CF, I’d probably edit that out, but—

Liz Shuman: Right.

Jonathan Singer:--this is part of the story, right?

Liz Shuman: Exactly! So, you know, it’s funny because I can remember being, maybe like nine or ten years old and my family, they would take us to church every Sunday and my friend who’d be up in the balcony, she would turn around and go, “Oh Elizabeth is here.”
“Oh how do you know?”
“Oh I can hear her coughing.” You know? It’s [laughing] we tend to cough a lot. You know, a lot of people will say, “Oh”—like, people who don’t know I have CF—“oh you have a cold in the summertime?! That’s so weird!” I’m like, “Yeah, I know, weird, right?” [laughing]

Jonathan Singer: Oh yeah, if only it were a cold in the summertime, that would be great.

Liz Shuman: Right.

Jonathan Singer: Okay, so what sort of things would land you in the hospital?

Liz Shuman: Well, pneumonia. Any type of lung infection I have. So basically, I culture… some pretty common CF bacterias might be pseudomonas, staph, MRSA. I have colonized pseudomonas and staph in my lungs, so I always have them in my lungs. Which sounds sort of crazy, right?

Jonathan Singer: It sounds really crazy that, even when you’re not, like symptomatic, you’re just walking around with that.

Liz Shuman: Exactly. Exactly. And so, pseudomonas is one of those bacterias that researchers are really interested in. Like, why are CFers—I would say probably 80% or more CFers have the pseudomonas. And it’s really difficult to treat and it really causes a lot of problems. So that’s definitely one bacteria that they’re really studying and trying to get a better hold of, and understand better.

Jonathan Singer: And so after two weeks in the hospital, you’ve been getting antibiotics and that sort of stuff, and it goes away?

Liz Shuman: No, I mean, I spend—

Jonathan Singer: I mean, not the bacteria, because that’s always in you, but like, the symptoms? What happens at the end?

Liz Shuman: Yeah. So, basically CF is something I have to manage every single day. So when I was a little girl and I was diagnosed, my mom, every night, would sit me down and have to pound my back for like a half an hour. I hated it. But my mom was like, really sweet, she would always say, “I’ll give you a little massage afterward” and that was my reward for putting up with her banging on my back. I mean, I would have like, big bruises on my back because--

Jonathan Singer: That was serious banging.

Liz Shuman: Yeah! She was, you know, we have really thick mucus, and so you’re banging your lungs to try and get it moving. Because if you don’t move it, that’s when the bacteria really starts, you know, staying and your lung function starts going down. We want to try to get rid of that mucus as best we can and get it moving. So “airway clearance” is probably a term that people have heard of when it comes to cystic fibrosis. And airway clearance used to be “postural drainage.” That is what the term was when people were hitting our backs.
Now, what’s really interesting: When I was younger, there was no such thing as an adult clinic. Because when I was diagnosed the life expectancy was twelve.

Jonathan Singer: Oh my God, and you were seven. Is that when you--?

Liz Shuman: Yup. Yeah. Uh-huh.

Jonathan Singer: So when you were seven, your parents heard, “She could be dead in five years”?

Liz Shuman: Yes. My dad actually had had four cousins in one family, there were four kids and all four kids had CF. And they all had passed away at an early, early age. So my dad’s recollection of CF is that not only is this a chronic disease, this is a fatal disease. And so, um, so when I was diagnosed the life expectancy was twelve. Today the life expectancy is thirty-eight. That’s huge. And that is absolutely, no questions asked, a direct result of people making donations to causes for cystic fibrosis, and all the doctors and researchers who’ve been, as I see it, just miracle workers. If it wasn’t for them, I would not be alive today. And I know that. And so, when I had gone to college was really the first year that adult CF clinics really opened up in the United States.

Jonathan Singer: So wait, so-- what do you mean by “adult CF clinic?” Just a place that treats adults with CF?

Liz Shuman: We had—yeah!—I was, even in my early twenties, in college, I was still going to the children’s hospital. I was in the children’s unit when I would go inpatient. You know, it wasn’t an adult disease.

Jonathan Singer: Yeah. And the little robes probably didn’t fit you at all.

Liz Shuman: [laughs; coughs while laughing] Right!

Jonathan Singer: So you’ve grown up—or CF has grown up with you.

Liz Shuman: Yeah, I always say I’ve been riding the wave of CF technology and advances. I have just happened to be hitting the life expectancy—as I’ve been getting older, the life expectancy has been getting older. So here I am, thirty-seven-going-on-thirty-eight, and the life expectancy is thirty-eight, so—

Jonathan Singer: So wait— what is that like? To have a disease where the life expectancy is like, your age?

Liz Shuman: Yeah. Well, I’ve always thought that growing up with CF has had a silver lining for me because I grew up with a great appreciation for life, and I think it’s a really special thing to even be a kid, a teenager, a young adult really appreciating each moment, you know? The moments I can appreciate are just some probably really silly, ridiculous moments to someone else. But to me, it was like, “Wow, I’m here doing this.” I really remember being at, like, a fraternity party in college and just, like, looking up to God and going, “Thank you, God! This is awesome!” The floors are disgusting, and it’s dirty, and it’s gross, and I was thinking, “Oh, I’m having the time of my life.” This is amazing.

Jonathan Singer: So you were grateful because you were just having a great time, and—

Liz Shuman: And I was alive!

Jonathan Singer: And you were alive.

Liz Shuman: I was alive! You know, there was a real chance that I wouldn’t have gone to college. You know, I always say that if you have to have CF, you want it how I have it. Because the reality is, a lot of CFers aren’t healthy enough to go to college. You know? They’re looking at lung transplants, they’re in and out of the hospital, you know, every month. It really can be a really brutal, horrible disease. And so I feel like, once I hit thirty, I sort of realized, “Hmm, I have a voice. I’m alive. I can breathe today, and I’m going to fight for all the little kids who are just fighting to breathe today.” I sort of took it on as this sort of personal mission, of like, “Oh I have a voice; I can actually help the kids who are just lying in bed, in the hospital, just doing all their airway clearance, and just trying to breathe.”

Jonathan Singer: So, for the last eight years, it sounds like you’ve had this mission, to [Liz coughs] promote or increase peoples’ awareness and knowledge of CF. What sort of things have you been doing?

Liz Shuman: Well, you know what’s interesting, it sort of unfolded organically. Like, people started coming to me and asking me to speak at CF events. And I sort of did one, and they asked me to do a couple more, and it just has all unfolded and—

Jonathan Singer: I don’t understand why, because you’re not interesting to listen to at all [Liz laughing], you’re not engaging, you’re king of boring—

Liz Shuman: I hear that all the time.

Jonathan Singer: Just kidding [both laughing].

Liz Shuman: Um, but most recently, you know, I was in the hospital about two months ago and my friend Nicole had started this Facebook group. It was called, OutRUN the Odds on Facebook but turns out we have now started a non-profit called, “OutRUN 38.” And we have this amazing momentum going and we’re able to spread the word for CF. I mean CF is sort of, one of these weird “orphan diseases.” I mean, there’s 30,000 of us in the United States, 70,000 worldwide, and so we don’t really get enough attention from the government. We get, you know, NIH does some research for us. But really, all the research comes from private funding and, you know, the everyday people who are willing to say, “Hey here’s ten dollars,” “Here’s a hundred dollars,” whatever. I mean, I’m alive because of all those people, you know. So, it seems like, to me, what I hear from a lot of people is they know what CF is, but they don’t really know what it is. And they have sort of heard about it. It’s interesting to just get that awareness out there. And I think now that we’re living longer, now we have more of a voice. And oddly, another interesting thing is CFers are not allowed to be around each other. We can actually share bacterias with each other. So we can’t actually even be six feet close to each other.

Jonathan Singer: Oh that’s so interesting. So there are no CF—

Liz Shuman: So you could never do CF camps, you could never really have CF friends. So Facebook and the internet allows us to have our own community and talk to each other like, “Hey, does this go on with you? Does this happen to you?” We never had that before. I never knew any other CF people besides my cousins who had passed away. I mean, I just-- wasn’t in my world. Now I’m, like, Facebook friends with all these other CFers.

Jonathan Singer: And what’s that been like?

Liz Shuman: Oh it’s amazing. You know, and I think this is really important for therapists to know, is that CF can be a really isolating disease, because we spend so much time like, being sick, or… I spend two hours a day doing airway clearance. And sometimes we’re just too tired to go out and be social. So it can be really isolating. And because not that many people have CF you sort of don’t know, is it the same? Like, am I on this path? Am I going to have this happen? It’s really confusing. So now that I hear other people’s life experiences, it’s like, “Oh, okay. That’s what that is!” “Oh! I didn’t realize that that symptom meant this!” And you know, it’s a way for us to educate ourselves on our own disease.

Jonathan Singer: So Facebook and other social networks, sounds like it’s been an amazing connector for folks with CF because—

Liz Shuman: Oh Yeah.

Jonathan Singer:—otherwise, it’s dangerous, for you guys to come together.

Liz Shuman: Yeah. Yup.

Jonathan Singer: I remember working with somebody back in the 90s, and um, the mom had post-polio syndrome. And so she had lost the use of her legs and was losing the use of her arms, and she was homebound, and—this was in ’96-97— [Liz coughs] and she said that it was the greatest time in her life even though she was basically homebound, because there were these things called “chat rooms” now [Liz laughs] and she could sit on her computer, right? With the Windows 3.1 or whatever it was, and just like, connect with all these people around the world that were experiencing the same thing she could. And she felt liberated, empowered, and free—

Liz Shuman: Not alone.

Jonathan Singer:—and not alone. She felt connected.

Liz Shuman: Yeah, and in a moment where, otherwise, would’ve felt very disconnected. Yeah, and maybe scared. And so here you have all these people, you know, helping you, supporting you. For me, a big time that I’m on the computer is two hours every day—an hour in the morning, an hour at night—I am on what’s called my “vest” which is this airway clearance machine, that I didn’t get until I was in my twenties. I mean, this is a new piece of medical equipment that I didn’t have when I was a little kid. So, again, part of becoming an adult with CF means you’re independent. I don’t have my mom coming over to my place every night to hit me on my back. So I put on this, it looks like a sort of life preserver, and it’s hooked up with, you know, these tubes, and it shakes me up. And that’s how I do my airway clearance as an adult, as an independent adult with CF. But it takes me an hour in the morning, an hour at night. And I’m, at the same time, hooked up to nebulizers so I’m doing my breathing treatments at the same time. And so, it’s really sort of a loud machine. I mean, my newer one is not as loud. So it’s really sort of difficult to listen to the TV or be doing anything. So that’s my time I go on Facebook and that’s when I’m connecting. I’m connecting to people on OutRUN38, I’m connecting to my CF friends. And it’s also a nice way, when you have CF there’s a lot of fatigue, a lot of just, down time. I spend a lot of time just resting, conserving energy. If I know I’m going to have a social event, I’m probably laying down for like, weeks ahead of time, just so that I know I’m going to have enough energy to go to something that I really want to go to.

Jonathan Singer: And the lack, the sort of lack of energy, or the decreased energy, is that because you’re not getting enough oxygen because it’s hard to breathe? Is it—

Liz Shuman: Well, we have to spend so much energy breathing every day. You know, we’re coughing, um, that’s energy. And to also add to my breathing problems, I also have cystic fibrosis-related diabetes. So my sugars are crazy all day. So that requires a lot of attention, a lot of energy. You know, if your blood sugar crashes, you know, that throws off your whole day.

Jonathan Singer: Now, I don’t know much about diabetes. There’s salt diabetes and there’s sugar diabetes. You said something—you said that there was the “salt test” for CF, do you have salt-related diabetes or sugar?

Liz Shuman: So I have—there’s Type I, Type II diabetes, right? Those are sort of the typical types of diabetes that are with your blood sugar. So I have, which is like, sort of a rare thing, which CFers get called cystic fibrosis-related diabetes—CFRD. Which is sort of a combination of Type I, juvenile diabetes, and Type II. So, it’s sort of its own monster. And so for me, how it’s complicated my life is that I run very low, low blood sugar. So I actually now have to wear this Dexcom, it’s called, which is this implant that I have in my stomach and it talks to this little thing that looks like a little iPod, and it’s constantly reading my sugars throughout the day. And why it’s really helpful for me, is it has an alarm feature. So if I’m going too high or going too low, it’s sending off an alarm. So for me, which is really important because several times I have, without recognizing I was dropping, you know, going low with my blood sugars, I was near coma. Like, so low I couldn’t even get to my orange juice. Couldn’t get to, you know—and orange juice is what I need to get out of a diabetic low. So having the Dexcom is having that little alarm saying, “you’re dropping, you’re going low” so that I don’t hit, you know, a near-coma experience. But again, the Dexcom wasn’t available twenty years ago. Again, I feel like I’m just lucky to be alive, and I’m only alive because of all these advances.

Jonathan Singer: All these new technologies, they’re amazing.

Liz Shuman: Yeah.

Jonathan Singer: So really quickly, what is it like to have the vest?

Liz Shuman: So, well, [coughs] the vest is amazing in that it allows me to be independent. [coughs] (On) days that you feel like you’re drowning in your mucus, it’s-- I will sleep with it on.
Jonathan Singer: Really?

Liz Shuman: Oh, my God! I’m like, waking up at three o’clock in the morning, putting it on, because it’s the only way to like, help move all that. Again, it’s really thick, it’s really sticky, and so we need help to move it all. When I’m in the hospital? I wear the vest six hours a day.

Jonathan Singer: So what is—is it squeezing you? Is it thumping you? Is it—

Liz Shuman: Yeah, yeah. All of a sudden, it expands with air so it’s tight around your lungs, and looks like a life preserver. And then all of a sudden, it has a percussion to it. So you can actually change the frequency and the intensity of the percussion and so, it is really sort of shaking you up.

Jonathan Singer: Wow. And when you say “percussion” you’re not, of course, talking really cool beats…

Liz Shuman: Yeah… [coughs]

Jonathan Singer: It’s not like Pharrell is programming the vest.

Liz Shuman: Well, however, I have been known to do music videos in the hospital with my vest on.

Jonathan Singer: Really?

Liz Shuman: [laughing] Yeah.

Jonathan Singer: [laughing] That’s fantastic.

Liz Shuman: Got to make it fun, you know?

Jonathan Singer: Right? Why not?

Liz Shuman: That’s what I say. [both laughing] Or, I call my nephew as I have my vest on and my voice is like [does impression of vest causing intense vibrato] and I say, [with vibrato] “Hey Mason, I love you” and all the nurses start laughing and are like, “We heard you out in the hallway, that was so cute!” [both laughing]

Jonathan Singer: That is hilarious. So you decided to go to school for social work.

Liz Shuman: Yeah. Yup.

Jonathan Singer: Did your experience with CF play into that at all?

Liz Shuman: Well, [coughs] I’m sure in some way it did. I always knew I wanted to help people. And I think that was even a part of me even before I was diagnosed. I can remember being fascinated by Helen Keller and people who were struggling with disabilities, and that was even before I had CF. So, I think there was a part of me that just is a helper by nature, but then to add the CF component [clears throat] I definitely felt like I’m headed in that direction.
I couldn’t imagine myself doing anything besides, you know, social work.

Jonathan Singer: So, what is it that you think social workers should know about CF? About working with folks with CF?

Liz Shuman: Yeah. That’s a great question. So, CF is not just a disease that affects our body. But it affects us, you know, spiritually, emotionally. Imagine yourself being diagnosed with this fatal disease when you’re a little kid. Imagine what that would feel like, to know at such a young age and try to wrap your head around mortality. I can remember being a really deep thinker. And not really having peers to quite understand the concepts that you were trying to wrap your head around at such a young age. Or even parents who may experience their own guilt, their own denial, and also can’t have those conversations with you. I can remember spending a lot of time just to myself, trying to figure out what this all meant. The other pieces—it really is a lot of grief work. There are—besides dealing with just life and death—there are a lot of other issues of just, like, basic losses, and not being able to go to a party on a Friday night.

Actually, a really interesting story: My cousin Mike, who had CF had passed away, and left me, like, five hundred dollars and said, “I want you to spend it on something fun—not books, not an education—fun.” And so I spent that $500 and booked a trip to Cancun for spring break with my college girlfriends, and a week before, I started getting sick and my friends go, “Liz will you please go to the doctor?” and I was like, “No! we are going to Cancun!” And they’re like, “Please, Liz?” This is back when I was totally in denial. [laughs; coughs while laughing]
Please, Liz? Can you go to the doctor?” I go to the doctor, they’re like, “Um, you need to be in the hospital.” And so I was hospitalized and I missed that trip to Cancun. And at the time, that was a big loss for me. So it’s little and small, like these little losses add up over time, where you start feeling like you’re missing out. And as you’re getting sicker, you’re missing out on more and more and more.

The other piece, I think for therapists to understand is, when you’re dealing with adult CFers, I sort of came up with this term, what I call “healthy sick.” And the world really hasn’t found a place for healthy sick people. A lot of us with CF, we recognize the importance of living and embracing a full life. We want to work, we want to have a job where we are able to take care of ourselves, and not feel dependent on family members or friends. We want to have a job that might be meaningful, but most jobs want healthy employees. Where we need to be able to go in the hospital a couple times a year, we need to be able to take time off to go to the doctor’s to prevent going to the hospital. So, the workforce really hasn’t embraced a place for adult CFers yet. And because this is really a new frontier to actually be an adult CFer, we’re still figuring this all out. And that has been a huge stress, to think, “Not only do I have to try to take care of my CF, but now I have to try to figure out how am I going to pay my bills? How am I going to keep a job? How am I going to keep health insurance? Because I’m going to need that? How am I going to do all that, and be sick?” And then add your stress, which of course causes inflammation, which of course is the last thing any CFer wants, is more inflammation. That’s all we have.

Jonathan Singer: I love that term, “healthy sick” because it does apply to many people these days, not just with CF—

Liz Shuman: Right, exactly.

Jonathan Singer: Go ahead.

Liz Shuman: So, for example, when I try to get on some short-term or long-term disability, like Aflac, or any of those, I could never get approved, because I have a pre-existing condition. And if you’ve been in the hospital in the last year, which—I’ve been in the hospital every year!—you can’t approved. And who needs that life insurance, that health insurance and that disability more? Healthy sick people! Right? So…

Jonathan Singer: Right, exactly. Yeah. Is there anything about the Affordable Care Act and the policies that have been implemented in the last few years around not being able to deny people because of pre-existing conditions, about those things that…

Liz Shuman: I think we’re getting better and I’ve heard some other CFers have some positive experiences with that, you know, so I think we’re making progress, but part of our work is with the actual employers. Are we employable? Are we your desired worker? You know, probably not—yet, we want to be. The problem is, for a lot of us with CF, we are dealing with a lot of chronic and persistent issues, but we may not be on our deathbed this moment, you know? And so, that may be something we have to think about a—you know—a lung transplant in the future, but as of today I don’t need one. But, I’m still going in the hospital every, you know, couple months or years. And so it’s, how do you manage that chronic illness in the workforce?
And also with your friends and family, you know, it’s being healthy sick—everyone wants you healthy for their function or their event, and you can’t go to everything, and yeah.

Jonathan Singer: Well it must be, must be hard to meet people, although you’re sort of public now because of the OutRUN 38—

Liz Shuman: Yeah.

Jonathan Singer:—and lots of folks know you as sort of as, you know, “Liz with CF” but I would imagine that, um, before people know that you have CF, they wouldn’t know that there would be any reason you might not be able to make it, because you look healthy, you’re a runner—

Liz Shuman: Right, exactly. When I went to college, I actually said, I’m not going to tell anybody I meet that I have CF. This was like my social experiment.

Jonathan Singer: Wow.

Liz Shuman: Would people like me for me, and not feel bad for me, right? And so I sort of said, I wasn’t going to tell anyone unless I had, like, a major hospitalization. Which at that point, I hadn’t really, I could pass. And no one would know I was sick and I hadn’t been in the hospital that much. So I really thought I could go through my college career and not have to tell anyone.
And I was there for not even a month and had a major hospitalization—you know, fever, hallucination, ended up in the hospital—I mean, it was bad. And so, I told probably about eight girlfriends. And probably until, like, my senior year, I mean that was really sort of all the people who knew. I mean, we would go, we would be in stealth mode, like secretly going to the hospital. I had severe episodes of pancreatitis back in college—it’s not a pleasant experience. But, we did that all secretly.

Jonathan Singer: Oh my God.

Liz Shuman: So I—you know, it’s interesting a lot of people would be like, they didn’t know that I was going through that at all, because I did look really healthy. And I think a lot of CFers can look really healthy.

Jonathan Singer: So, if I had somebody come to me, and she said, “Oh, you know, I have CF, I’m healthy sick…”

Liz Shuman: Yes.

Jonathan Singer: I’m not sure if I should let folks know.” What would you suggest?

Liz Shuman: Right. Disclosure! This is, sometimes telling people is like coming out of the closet in a way, you know? It is, it’s this real private thing that you know is going to change how people look at you, may change how an employer looks at you, um, how a potential spouse or someone you’re dating looks at you. So it really is that sort of scary experience of, like, “Oooh, okay here we go!” And we have to psyche ourselves up to tell people. I mean, disclosure of CF is certainly an issue that therapists should be aware of. Absolutely, and it will be unique to each person, but, um, that’s a big part of all this-- how to tell people, and when.

Jonathan Singer: So you went almost your whole college career without being out to most people about it. Would you say that was a good idea? [Liz laughing] Are you glad that you did it?

Liz Shuman: Um…

Jonathan Singer: I know we can’t generalize to everybody with CF, but for you?

Liz Shuman: I mean, I think at that point I was still really in denial about what this disease was, what it would mean for me, how I would have to live my life with it. And so, I think that my denial really was… um, not helpful for me at that time. I think that CFers can either sort of maybe go two ways. One, sort of seeing things negative, maybe getting depressed or anxious, or being overly optimistic and, “This doesn’t affect me at all.” And I sort of happen to be one of those “too optimistic” people and I think that was a problem. I think it really—there were many times I can look back like being, “Wow, I should’ve totally been in the hospital at that point.” And I just couldn’t—I don’t know what it was, it was just I thought that I could just suck it up and just keep going. And I just, I couldn’t. But it really took me many years to sort of break free of that denial. And that was really friends who really just, were like, you know, sitting down with me and talking to me for hours about life “This is real, you got to really figure this out.”

Jonathan Singer: So maybe one of the decision points as a therapist is saying, “Is this person wanting to sort of be in the closet about their CF because they themselves are in denial—and therefore putting themselves at risk? Or, are they sort of accepting of their CF status and what that means, but they actually have concerns about being out, for other reasons. And that might be an important thing for someone to suss out in this, with their client.

Liz Shuman: Absolutely. And I think that saying that there are risks to—health risks—to a person with CF in denial is a really good point. You know, that being in denial could really take—could put a person in the hospital and take years off their life. Easily.

Jonathan Singer: So, obviously there’s the medical side that a therapist, or a social worker, would have to understand, and doing all the service coordination around the medical side would be important. In terms of, like, the psychotherapy, some of the things that we were talking about. You mentioned other things, like relationships, and job, and things like that. Are there any other things that you can think of that would be good for social workers who might be doing more of the psychotherapy side than the case management side?

Liz Shuman: Yeah, I think addressing the family system is really important. You could have a CFer who’s not in denial, but the whole family is. How does that impact that person’s ability to get care or, um, you know, it gets really tricky because we sort of have to depend on people even though we may not want to. And then, does that create a sense of burdening other people, or other people feeling like you are a burden, you know? And telling you you’re a burden? It’s all those family dynamics, I think, are definitely something a therapist should look at and examine. And also, the age of the diagnosis. How was the parents’ response? It’s really common that CF parents may, um, sort of panic and sort of over-protect a CF kid, not let them do a lot of you know, “normal activities.” CF kids who don’t go to public school because a parent is too fearful of bacterias. And again, some of that is really reality-based. Some CFers truly can’t. Which again, that’s another loss, which I was talking about earlier.
But looking at the mother and father separately, their own personal reactions and how they responded to the disease themselves. Whether it was guilt or anything like that. And also how did they take care of that child during those early years toward adolescence?  And then, how are the parents managing young adulthood? Sending their child to college? Is the child feeling equipped to be able to do that? Do they know how to access hospitals? Do they know what doctors to go to when they’re, you know, a young adult? Do they know how to order a vest? Do they know what CF clinic they’re going to? Also, with the life expectancy being so young, is there a trust? Is there some money set aside so in case your child isn’t going to be able to have a career or take care of themselves financially, what is the plan? And I think a lot of families, because CF takes so much day-to-day care, like, getting the meds, getting your treatments done—that it can be really hard to try to project what are the needs going to be when a person is twenty, thirty, forty.

Jonathan Singer: That sounds overwhelming.

Liz Shuman: Yeah. Right. On top of, “Wow, this is really hard to watch. Really hard to watch somebody I love be really sick.”

Jonathan Singer: Were you ever at a point where your family was like, “I think Liz is going to die”? And they, they kind of prepped for that?

Liz Shuman: No, I think that we all really experienced a lot of denial. I think CF was something really hard for my family to talk about. And so I don’t think there ever was quite that panic. And also I have just been healthy enough that I don’t think I ever alarmed them. Although, there, I did have some hospitalizations where I did feel like, “Wow, if I leave right now I would get it, I feel that sick.” But I don’t remember communicating that to anyone. Again, there’s that, you sort of, you’re so sick that you can’t communicate, one, and you can’t breathe, which makes it hard to talk, you know? And you’re going through all this stuff internally, that you almost can’t say that to your parent because in some weird way the sick child is also protecting the parent. You know? Some CF parents may experience their own depression, their own anxiety, and so the sick kid somehow ends up being the protecting kid. And so we might protect the parents from how poorly we are feeling.

Jonathan Singer: That’s a tough position.

Liz Shuman: Right. But again, I think, you know, my parents, my dad experienced his four cousins passing away, so I’m sure they were very in tune to that being a possibility. Frank Deford, he was a sports journalist. He had a little girl, Alex, who had CF. and I want to say she died around, somewhere between eight or ten years old. And he had written a book and there was a Lifetime movie. And that was the only information I had on CF as a kid, was this book and this movie. And here this girl dies at ten. And that was it! That’s all I had for information. And that was all my parents had for information. So I could only imagine how scary it was for them to get that diagnosis.

Jonathan Singer: So what are some resources that are out there these days—for parents, for professionals, for people living with CF—or CFers, as you’ve been calling them. [Liz laughs, coughs] You know, other than the Frank Deford book and, and made-for-TV movie kind of thing?

Liz Shuman: Well, I think… We have the Cystic Fibrosis Foundation, which is a great resource. They do the Great Strides walks all around the United States and I think is sort of the first go-to place that a lot of people if you go online might see. Nowadays there are some really amazing books. There was one book in particular that I got, probably when I was about twenty-seven, that I’ll share with you the link. And I remember that being like, “Oh my God—look at all this information! I didn’t know that!” You know, I remember it just being like, I still go to that book as my go-to like, “I’m feeling this, what is that going to mean?” It’s sort of helping me predict what is going to happen. I have really used Facebook and talking to other CFers as a huge resource. There are a lot of groups that I think parents can go to. Something to be cautious about with some of the Facebook groups, is some of them are, oddly enough, highly offensive and mean-spirited and immature. And so you have, like, young parents with a newly-diagnosed two-month-old kid going on looking for support and CFers are responding in these really outlandish, offensive ways. So, be—I’m just saying that to be cautious of what groups you’re getting into. I have found OutRUN 38 to be really interesting that a lot of parents of CFers are reaching out to me, asking me questions. I always feel like it’s really interesting for people to hear my story because for a parent who now has a two-month-old, who they get this diagnosis, I think there’s so much fear and panic. To hear my story, just is like, [imitates sigh of relief] “Okay” you know? Allows them to take a deep breath for a moment—

Jonathan Singer: Right, because you’re successful. You’re alive. You’re able to live a life that they would want for their kid.

Liz Shuman: Right. Right, exactly. So, you know, but with that being said, I do have to remind people that not all CFers lives look like mine. You know, there are many out there who are not making it to 38, and needing transplants. And so I think we still have a long way to go. 38 is our life expectancy, and it needs to be a cure. And really we want CF to stand for “cure found.”

Jonathan Singer: Mmm... That’s beautiful. [both laughing] Is there anything else that we should touch on? We’ve covered a bunch of things.

Liz Shuman: One other thing. So, another reason we have fatigue, is we actually have a hard time absorbing food and nutrients. And so we actually have to take enzymes before every meal. So I probably take about five pills before every meal, just so that I can absorb the right nutrition, and enough fat and enough calories. A lot of CFers tend to be on the thin side. Our doctors are always asking us to fatten up, get fat. Get chubby because as you expand in weight, it actually expands your lungs. So you can breathe better and your lung function goes up with an increased weight. So, trying to keep weight on is something really important, and getting the right nutrients. I also have to take vitamins. I take a special CF vitamin called ADEKs—A, D, E, and K. For whatever reason we don’t absorb those vitamins very well. And so on top of enzymes, I also take a couple inhalers every day. I take some antibiotics. Periodically, like the Z-Pak, I take that all year-round. I’m always on that, I don’t ever stop, because for whatever reason, that helps with inflammation with CFers. I have to take steroids at times. I have to do sinus rinses. A classic sign that a kid might have CF is we have nasal polyps. And so that’s actually one of the first signs that they knew I had CF, is I had nasal polyps. And it was like, “Oh, we know what that means.” So, um—

Jonathan Singer: What is a nasal polyp?

Liz Shuman: It’s like a little bump in your nose. And so it blocks your nose and can actually cause your nose to—if it goes on and on forever—it can cause deformity of your nose because—in changing your nasal passages. A lot of sinus problems. I’ve had a couple of sinus surgeries. Because it’s literally all that thick mucus is also in all your sinus cavities, and so they literally go and scrape out your nasal cavities. So you’re managing your sinuses on top of it. And so it’s, you know, and then managing the diabetes all day. Insulin if you need that. So just the regular, you know, maintenance on a healthy sick day is a lot. So I think just for people to know that even a healthy day for a CF person is a lot, a lot of work.

Jonathan Singer: And as you’re talking about it, I mean it makes sense that if you’re anything but healthy, hospitalization—the kind of, intensive treatment, like you couldn’t do that on your own. You couldn’t manage that. If this is what you have to do when you’re doing well.

Liz Shuman: Right. Exactly.

Jonathan Singer: When you’re not doing well, I can’t even imagine. You just couldn’t do it outpatient.

Liz Shuman: Yeah. And so, and then eventually you need—it’s like I was saying—six hours of vest in the hospital, which you know, that’s a lot of work. Plus you’re doing your IVs in the hospital, and all your other treatments. And you’re just trying to rest. You’re just trying to let your body relax. Like, a lot of times—this is actually probably an interesting point for therapists to know: Like, I can get into a mode where I am just getting—I can feel myself getting sicker and sicker but I’m like, “Just push through it, just get to the weekend, you can rest all weekend. Just keep it going, you’ll get better.” Then finally the doctor or I will make the decision, like “Okay, you need to be in the hospital.” And then it’s finally like, you click into [mimics sigh of relief] “Okay, I don’t have to fight it any more. I don’t have to resist it. Now I can just relax and focus on healing.” So there’s something about going in the hospital too, that’s like you don’t have to fight so hard. “Now I can just focus on getting better.” But, for healthy sick people, that’s also stressful, because now it’s at how many sick days have you added up for the year? Um, who’s going to pay your mortgage that month? (What about) the work that’s piling up on my desk right now? So going into the hospital, as much as that’s [mimics sigh of relief] “you don’t have to fight it,” there still is all those other things that you’re trying to manage.

Jonathan Singer: Nothing stopped. I still have to do two weeks’ worth of work.

Liz Shuman: Exactly. So for a lot of people with CF, for many years I never took a vacation because I needed my vacation time to be a vacation in the hospital. I used to sort of joke around, “I’m at Yale Hotel!’” You know? “Going to the spa!” You know, um, you know, and that was my “vacation.” That was how my vacation time was used.

Jonathan Singer: It’s such an interesting reframe. Because when you talk about going to the hospital [Liz coughs] I think a lot of folks think about, like, okay going to the hospital there’s an ambulance, it’s sad, it’s depressing, and it’s like awful, like life or death. But, you know, when you say, you know, the vacation, it almost sounds like a coping strategy.

Liz Shuman: Yeah.

Jonathan Singer: To be like, “You know what? This is something I’m doing for—that is healthy.”

Liz Shuman: Yes. Oh, absolutely.

Jonathan Singer: Like, just in the same way that I might go to the Bahamas for two weeks—boy, that would be nice.

Liz Shuman: Yeah. [laughs]

Jonathan Singer: No, I would never do that. But if I did, that would be like, resting up. Now that I’m back, I’ve got all this energy. Yes, there’s all this other stuff… that’s an interesting reframe.

Liz Shuman: Yep. Absolutely. So um, but part of the loss is, now I don’t get time to actually go to the Bahamas.

Jonathan Singer: Right.

Liz Shuman: Right? So—

Jonathan Singer: And you might actually lose your job.

Liz Shuman: And I might lose my job. Absolutely.

Jonathan Singer: Which is huge.

Liz Shuman: So even when you’re healthy now you’re stressed because you’re thinking, “How long can I keep this up?” You know, before I end up in the hospital again. So it’s—having a support system, having a therapist, I think is really important pieces at different points in a CFer’s journey. So I think it’s really important that therapists know the ins and outs of it. Because it’s not just like, “Oh this person is dying from CF.” There is this lifetime of experiences that may be difficult to navigate when you’re in it, and so having someone help you through that is a critical thing.

Jonathan Singer: So you’ve talked a little bit about OutRUN 38, the Facebook page. Why running?

Liz Shuman: So, running for me has become this thing where all of a sudden my lungs open up and I can take in a deep breath and I feel strong, I feel powerful, and I feel like I am beating the CF. Like, it’s—I’m out there and I’m imagining just kicking CF ass. It’s just, this really powerful experience and so, um, about—I think it was like 2008, you know I had been running maybe three miles here or there, and you know, I was a gymnast growing up, and a dancer, and so you know, being active was a really important part of my life, and I think a part of why I am as healthy as I am. And my parents were great in letting me do all that, you know? But in 2008, I remember sitting on the beach with my friends and I said, “I’m going to run a half marathon.” And they’re like, “No you’re not.” And I was like, “I am. I am.”

Jonathan Singer: This is the optimistic part of your…

Liz Shuman: Yeah, exactly! Right? I’m like, “I am.” They’re like, “Well, if you do it, then I’ll do it!” And so I ran my first half marathon with my friend Kim up in Portland, Maine, and we crossed the finish line together, and I ended up going back to the doctor’s and my lung functioning had actually improved! Which is, the belief was always, you know, lung damage was permanent lung damage, and here I was sort of making a reverse on some of that lung functioning.

Jonathan Singer: Wow.

Liz Shuman: And it was like, “Huh, okay.” And my doctors were like, really continued to encourage me to run. Which is interesting because a lot of my friends and family are like, “I don’t know… you shouldn’t do that, you’re going to really exhaust yourself. It’s not good for you.” And I’m like, “No you don’t understand—it is great for me.” So running, and any form of exercise for a person with CF is not only just, you get all the regular health benefits, but it actually is improving our lung functioning. So, running has become for me how I am able to postpone, delay, or prevent altogether a lung transplant.

So I ran that half marathon. I had trained for a full marathon, ran up to twenty miles and then got sick right before—two weeks before my actual marathon. So, hopefully, one day I’ll be able to do that. And then I ran another half marathon with my brother who is an amazing runner. So when he finished he came back around and got me and we crossed that finish line together. And now I’m actually training for another half marathon, which will be right around my thirty-eighth birthday-- which is the life expectancy for CF. So it will be a very meaningful run and a lot of out runners will be there running with me. So now when I run I just imagine not only what I’m doing to fight CF but I imagine what that experience is going to be like, all of us doing that together. So any form of exercise really is critical for CFers. So its definitely something to encourage. Of course, we all have to listen to our bodies and know when to rest—that’s equally as important. But certainly go ahead and encourage the CF people you know to go ahead and get active in any way they can.

Jonathan Singer: Of course doing it while making sure they’re talking to their medical providers.

Liz Shuman: Absolutely!

Jonathan Singer:—for monitoring and all those sorts of things—

Liz Shuman: It’s not a substitution for your vest. I learned that one the hard way.

Jonathan Singer: Oh, did you try and be like, “I’m not going to use my vest”?

Liz Shuman: Yeah, exactly, I was like,Ah, this will be like—replace the vest time with running.” And my doctor said, “No, all of that mucous is still creeping into all of those little, little airways into your lungs that running won’t get it out of. You still need to do the vest on top of your exercise.” So, certainly continue to talk to your doctors about your exercise because, like, for me, my diabetes, trying to manage my diabetes through running. We also have what’s called “mucus plugs,” where all of a sudden, I’m literally clogged, like blocked. And so you literally can’t breathe. And so, that’s happened to me, like miles away from home. [laughing]

Jonathan Singer: Wait so—wait, what happens?

Liz Shuman: It’s called a mucus plug. And so literally the mucus just sort of gets jammed in the airway, and can’t move. Again, it’s really thick. It’s more thick than the average person, this mucous, and so we—

Jonathan Singer: So you can’t breathe at all?

Liz Shuman: Yeah, you’re like barely breathing. I mean, you’re getting enough in, but you can’t like take a deep breath in. You certainly can’t run at that point. It’s stuck. It’s blocked. It’s plugged.

Jonathan Singer: That sounds terrifying.

Liz Shuman: It is! And I didn’t know it was happening to me the first time it happened. I was like, “What is this?” And I came home and I threw on my vest, probably for like the next three hours, and it was, really scary. I was just like, “Oh my God what is happening?” And my doctor was like, “Oh yeah that was a mucus plug.”

Jonathan Singer: So could you have died there? I mean, do people die from that or no?

Liz Shuman: I mean, I don’t think you die from it, but it’s certainly a reason people might end up in the hospital. If you can’t clear that, that can cause further inflammation and infection and damage, so the goal is to unplug it and move that mucus and get that airway clearance going.
So certainly there are risks to running and exercise, but working with your CF team to look at and examine those risks, I think is certainly beneficial because what any form of exercise can do to improve our lung functioning is definitely worthwhile.

Jonathan Singer: You know, it’s one of those things it, sort of, seems counterintuitive, right?

Liz Shuman: Right.

Jonathan Singer: People are like, “Okay, don’t tax you lungs, like don’t do anything that might stress it out.” But your experience was actually, “No, this is helping.” And I suspect it’s probably something that because you are on the cutting edge of adult CF-ing—

Liz Shuman: Yeah. Yep! [laughs]

Jonathan Singer:—that there are a lot of things you are doing that people haven’t done before.

Liz Shuman: Yeah, exactly. I mean, I have seen—now that, you know, I can see people on Facebook, and other CF people—I have seen CF people running with an oxygen tank. Biking with an oxygen tank.

Jonathan Singer: Wow.

Liz Shuman: Near transplant, still fighting the good fight. And that inspires me. I look at them and I think, ”Oh, God, if they can do it, I can do it.”

Jonathan Singer: [laughing] That’s fantastic. Man. Yeah. “This disease is not going to stop me.”

Liz Shuman: That’s right.

Jonathan Singer: What is your goal? With OutRUN 38, and what is it that people can do if they’re excited about some of the things that you’ve talked about and want to know more, and want to be a part of that? How do they do that?

Liz Shuman: So you can go to OutRUN38.org to check us out. Or find us on Facebook, which is OutRUN the Odds. Our sort of line for all this, because there’s so many parts to OutRUN 38 is that it’s “Friends supporting friends supporting healthy living supporting a cure for cystic fibrosis.” I mean, really, it’s a bunch of friends, or new friends through OutRUN, who are encouraging each other to get healthy and be fit by running, walking, and swimming. All people need to do is log their miles. We’re not asking for money, we’re just asking for your participation and your miles. So, it’s a great place for people to get support for, you know, themselves as they’re getting fit. Or even if they’ve—I think one of the exciting parts of Outrun is I think people get so much support even if it’s just their first mile, or they ran one mile. You don’t have to be a marathon runner to be a runner. You know, you put one foot in front of the other, you are a runner. So, we support the fitness and it’s a place to talk about community and friendship. And ultimately it’s a place where we want to find a cure for cystic fibrosis.

Jonathan Singer: That’s great. Liz, thanks so much for taking the time to talk about CF, CFers’ treatment, the experience of being a person with CF and a social worker, and for all those insights. I really appreciate it.

Liz Shuman: Well, thank you for having the time to do this.

Transcription generously donated by Meredith Amshoff, a recent MSW graduate of Boston College, who is currently working with Catholic Relief Services in Kampala, Uganda, and edited by Ester Park, an aspiring clinical and school social worker from New Jersey.  

References and Resources

  1. Cystic Fibrosis Foundation: http://www.cff.org/
  2. OutRun 38: http://outrun38.org/
  3. OutRun the Odds Facebook group: https://www.facebook.com/groups/outruntheodds/
  4. Today Show (June 22, 2014) Thousands run for an inspiring stranger. http://www.today.com/video/today/55475981#55475981
  5. Frank Deford on CFF: http://youtu.be/0Xl75VC8pME
  6. Deford, F. (1983). Alex: The Life of a Child. New York: Thomas Nelson. http://www.amazon.com/Alex-Life-Child-Frank-Deford/dp/1558535527
  7. Alex: The Life of a Child (1/7) http://youtu.be/ir2biconm-I
  • Based on true events, 'Alex: The Life of a Child' follows former 'Sports Illustrated' writer Frank Deford and his wife Carole when their happy, all-American family is rocked to the core when their baby daughter Alex is diagnosed with Cystic Fibrosis. While CF sufferers were almost certainly doomed to an early death in the Seventies, Alex grew into a child who showed remarkable courage and strength in face of her illness. Her loving family were quick to rally around her, determined to show the same bravery as the little girl as they supported and cherished her through life and struggled to move on after her death at the tragically young age of eight.

APA (6th ed) citation for this podcast:

Singer, J. B. (Producer). (2014, September 2). #89 - Healthy Sick - OutRunning Cystic Fibrosis: Interview with Elizabeth Shuman, LCSW [Audio Podcast]. Social Work Podcast. Retrieved from http://www.socialworkpodcast.com/2014/09/cystic-fibrosis.html

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