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]




Transcript

Introduction
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.

Interview
(forthcoming)

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

No comments: