Embracing Dysphagia: An interview with NFOSD President Ed Steger
June was National Dysphagia Awareness Month. Once again, we (SimplyThick) were proud to support the National Foundation of Swallowing Disorders (NFOSD) to raise awareness across the country. One thing I always try to do is to keep our attention on the end-users – patients and their caregivers. Which is why I want to introduce you to Ed Steger. He is a stand-up guy and someone who has dysphagia as a result of his fight with head and neck cancer. But he also rejuvenated and brought life to the NFOSD.
I first learned about Ed’s journey when he shared his story on stage a few years ago at the Dysphagia Research Society meeting. It is a powerful story. He mentions in the interview below that he underwent a 12-hour salvage surgery and aggressive chemotherapy. What he doesn’t mention, which he shared onstage, is that he did it with the hope that he could see his daughter graduate. His love and courage brought tears to my eyes then, and even now when I think about it.
I don’t think Dr. Belafsky could have picked a better person to lead the NFOSD. I hope you enjoy this interview!
We know that dysphagia is very personal for you. Can you provide an overview of your story?
I am a head and neck cancer survivor, diagnosed with stage III/IV base of tongue squamous cell carcinoma cancer in April 2005. From mid-2005 to the end of 2007 (2.5 years), I underwent 36 IMRT radiation treatments, 6 surgeries (including a 12-hour salvage surgery), and 8 different chemotherapy regimens, with one regimen lasting more than six months. In late 2006, my medical team recommended palliative care. Not ready to go quietly into the night, I opted for aggressive (and toxic) chemotherapy. It worked. I have had no evidence of disease since late 2007. I was also diagnosed with severe dysphagia (difficulty swallowing) in 2007. Prior to my cancer diagnosis, I was a management consultant and program manager with a focus on information technology spanning many industries including healthcare, manufacturing, finance, and entertainment. As part of my treatment journey, from 2007 to 2012, I wrote over 100 blog entries on a wide variety of subjects (health insurance, medical research, the new normal, clinical trials, etc.).
My cancer changed everything, and the impact of my life-saving treatment left me with lifelong speech and swallowing deficits. This overview is the tip of the iceberg in my journey.
As a dysphagia patient yourself, how easy was it to find the resources you needed?
If there is a silver lining to this story, it was my geographic proximity to the #1 rated cancer center in the world, the University of Texas MD Anderson Cancer Center. My rehabilitation included pairing me with a brilliant, seasoned speech-language pathologist (SLP) named Brad, who addressed my speech and swallowing deficits. His motto throughout my treatment was, “Use it or lose it.” 3.5 months after my 12-hour salvage surgery, I was communicating almost exclusively by writing. Brad would chide me, in a supportive manner, saying, “Ed, use it or lose it [referring to my speech].” I began talking again and my speech returned close to normal after 2 months. I was thrilled, given that my left lingual nerve was severed as it had run right through the center of my base of tongue tumor.
Brad also taught me the supraglottic swallow technique. My version of this technique is to hold my breath, avoid distractions, recline comfortably, and let gravity do the work as I swallow. I consume liquids only, but have been able to avoid the need for a feeding tube for the past 14 years. It takes focus and energy and is not a socially acceptable means of eating or sharing a meal. At an estimated healthcare cost of $31,000 annually for someone on a feeding tube, it feels as though I’ve saved our healthcare system in excess of $400K during this timeframe.
When Brad left MD Anderson, I transitioned to receiving treatment from another brilliant, caring SLP, Holly. She plays an important, ongoing role in my medical care. Thank you, Brad and Holly.
How did you become involved with the NFOSD?
In 2011, my speech had deteriorated due to continued lingual nerve damage, a consequence of the delayed impact of radiation, but remained functional. My swallowing inability, however, was what was most bothersome. I sought out the world-leading physician in the treatment of dysphagia, Dr. Peter Belafsky, at UC-Davis Medical Center in Sacramento. My sister joined me for what I assumed would be a 20-minute clinical evaluation. We completed an in-depth assessment, which lasted closer to an hour.
Two other events happened in this session. First, I bonded with Dr. Belafsky. Second, Dr. Belafsky asked if I had some time to discuss an “idea” that he had. He spent the next hour introducing me to the National Foundation of Swallowing Disorders, an organization that he co-founded in 2006 with two former patients, Sonia Blue and Michael Donovan, and a speech-language pathologist, board-certified in the treatment of swallowing disorders, Jan Pryor. The Foundation’s infrastructure had been put in place. It was a legitimate 501 (c)(3), California-based non-profit with a website, but it had become dormant with virtually no resources. Dr. Belafsky asked if I would be interested in becoming the volunteer president for this foundation. After speaking with Sonia later that week, I accepted the offer.
What were your initial Foundation activities?
The first year was a whirlwind. We recruited a Medical Advisory Board, began holding regularly scheduled board meetings, raised some funds through our board members along with friends and family, established a Facebook page, and structured the Foundation to frame initiatives around four pillars:
· Providing direct patient and caregiver support
· Increasing dysphagia awareness
· Offering enhanced dysphagia educational programs
· Supporting promising dysphagia research
These four pillars continue to help guide the Foundation and serve as a sounding board for all Foundation activities.
What are your proudest accomplishments of the NFOSD?
I’m proud of so much that we’ve accomplished. First, we have an amazing team. This includes our Executive Director, Elizabeth Lipton. She and her staff currently do most of the Foundation’s heavy lifting. We also have a strong and active board of directors and medical advisory board who assist with developing patient and caregiver resources. Our accomplishments would not be possible without the generous support of our sponsors and members. I’ll highlight a few activities from each pillar that makes me proud.
· Providing direct patient and caregiver support. We refer patients to qualified clinicians and medical teams worldwide through a global network of swallowing disorder specialists on a daily basis. We have established 15 ongoing in-person support groups in the US (pre-pandemic), and two active Facebook forums where patients and caregivers impacted by swallowing disorders can connect with others. This forum receives about 1,000 comments per month. I thoroughly enjoy seeing the peer support that exists within these groups. We also developed a Swallow Exercise Portal on our website that includes short exercise demonstration videos and a free downloadable template to be used under the guidance of one’s healthcare team. This section of our website is viewed more than 5,000 times per month and is the #2 organic Google search result for “dysphagia exercises.”
· Increasing dysphagia awareness. We created a trifold brochure that is free upon request to Foundation members for use in clinics and hospitals. These are typically ordered in quantities of 100, and we’ve distributed about 70,000 brochures over the past 5 years. We have also met with the NIH and members of Congress in both the Senate and House to advocate for improved funding for swallowing disorder research. For the past several years we have placed a lot of effort into a variety of activities supporting National Dysphagia Awareness month (June). Remember the Thickened Liquid Challenge? That was an initiative led by the NFOSD and SimplyThick, LLC. This year’s Dysphagia Awareness Month theme focused on the determination and resilience of patients and caregivers, expressed by sharing our community members’ photos and stories. We reached almost a million views on our website and social media assets.
· Offering enhanced dysphagia educational programs. We began offering swallowing disorder webinars about 5 years ago. Keynote speakers volunteer their time and are leaders in this field. Our May 2020 webinar, which focused on managing dysphagia in the ICU presented by swallowing specialist, Stevie Marvin, drew over 2,000 registrants spanning 35 countries and our most recent webinar had well over 1,000 registrants. We’ve delivered about 3 dozen webinars over this time period and I’m proud of the quality and feedback we receive from patients, caregivers, and healthcare providers. We have made it easy and affordable for people to attend. Our webinars are always offered free of charge to students as we recognize how important it is for students to have access to high-quality information as they prepare to begin their careers. I’m really pleased with the exposure to this disorder that our webinar series provides.
· Supporting promising dysphagia research. We provide the NFOSD Michael Donovan Innovation Award annually to a presenter at the Dysphagia Research Society Annual Meeting who demonstrates swallowing disorder research that is impactful, high quality, and translational. We have also contributed funding that resulted in a published peer-reviewed paper on the cost burden of dysphagia to society, as well as one campaign that led to an ongoing phase I/II stem cell clinical trial to address dysphagia in head and neck cancer survivors.
What is the future of the NFOSD?
We are continually adding new programs in support of our mission and the four pillars that support it. A recent addition (May 2020) was the hosting of our first virtual online support group. This meeting was facilitated by Sonia Blue (a licensed marriage and family therapist) and Jan Pryor (board-certified swallowing specialist). We are assessing ways to make this an ongoing foundation offering. We have several other exciting initiatives under consideration to support both patients and healthcare communities. The “invisible” nature of a swallowing disorder makes it one which is often marginalized, misdiagnosed, and frequently undertreated. As such, our work here will never be done. We’ll continue to focus on initiatives that strengthen the pillars that support our mission.
What can people do to support the NFOSD?
There are a number of ways in which people can support the NFOSD:
· Become a Member: We offer an annual membership ($10/year for patients, caregivers, and students). Benefits of membership include free access to all of our Dysphagia Webinars, free informational brochures, access to our Board and Medical Advisory for clinical questions, and knowing you are making a positive difference in the lives of those with swallowing disorders. Click Here to Become a Member.
· Donate: We rely on the financial support of our sponsors and donors to continue advancing our mission. Any amount helps! Donate Now
· Share Your Story: We seek volunteers year-round to share their stories on our website. This supports our community members to know that they are not alone. Learn More
· Join a Support Group: We are always looking to expand our network of local support group chapters. We have an excellent support group coordinator who provides guidance on establishing a new group. Find A Support Group
If you are interested in learning more about the NFOSD and ways in which you can get involved, please don’t hesitate to reach out at firstname.lastname@example.org.