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Dysphagia: The Invisible Disorder

Swallowing disorders affect 1 in 25 adults annually1. This month we will be following the stories of patients suffering with dysphagia, the difficulty or inability to swallow. Ed Steger, President of the National Foundation of Swallowing Disorders (NFOSD) and five-time cancer survivor, explains the importance of spreading awareness about dysphagia.

Q. You refer to dysphagia as an “invisible disorder.” Can you explain what this means?

A. A swallowing disorder is not visible. You look normal, therefore you are normal. Your friends, work colleagues, clients, medical team, and family don’t see your disability. They forget or don’t understand. After all, how can someone possibly “forget” how to swallow; it’s like breathing, isn’t it? I haven’t had a real meal in over 10 years. I consume (not eat) my nutrition orally. I need to do it in isolation and I need to concentrate so that I don’t aspirate. I hold my breath, I recline, I put the bottle to my mouth, my hands tremble with anxiety, I tilt it up, I let gravity do the work. I “hard cough” a few times to clear whatever liquid penetration may have slipped past my epiglottis. This is not pretty and it isn’t social. Some of my best friends still slip… “hey Ed, let’s catch up over lunch.” Then, they catch themselves. The words “Sorry, I forgot” leave their lips. All I’m thinking is I’m flattered you still want to catch up and no worries about the slip, my disability is invisible and it’s easy to forget if you’re not walking in my shoes.

Q. Talk about NFOSD and the purpose of the organization. What does it mean to you?

A. Our mission is to improve the lives of all those with a swallowing disorder. We do this using four pillars: providing patient support (e.g., referrals and a patient forum), increasing awareness (e.g., website, social media, meeting with people in Congress and NIH), promoting education (e.g., webinars, established relationships with about 70 Speech and Language pathology university programs), and funding promising research (e.g., stem cell research to increase muscle tongue strength, which recently became a phase I approved FDA trial, and research on the cost of dysphagia to society). We are running on all cylinders with the resources we have available to us. All foundation and medical advisory members (myself included) are volunteers. We have two part-time employees; both are certified speech language pathologists. We are giving this disorder the voice it has been lacking. We are filling a void that needed to be filled.

Q. What are some patient stories that stand out to you during your frequent interactions with those suffering with dysphagia?

A. We are referring 25 to 30 patients and their caregivers monthly to qualified speech language pathologists, physicians, or medical teams worldwide. This is a steady increase in referrals that I attribute to the growing awareness of this disorder. In the past three years, we’ve referred over 500 people. Because we are an organization grounded in patient advocacy, among other goals, we do not offer patient-specific assessments or diagnosis. It is the common themes that jump out among the patient inquiries. Here are the top few: 1) my doctor doesn’t believe me and thinks it is all in my head, 2) I thought I was the only one, 3) I’m embarrassed, all my friends have abandoned me, and I’m isolated, lonely, and depressed, 4) I had no idea how focused our lives are around eating, 5) caring for my beautiful, loving infant and/or child is taking all my energy, there must be something that can be done, and 6) is there any hope or treatment to help? Almost every contact literally brings tears to my eyes. I listen to their coping mechanisms and find compassionate humor. One energetic type A personality wears multi-colored blouses when she goes out to eat so that food that she drips on her blouse blends in. Another patient, I recall, orders food so that the wait staff doesn’t bother her, and then she moves the food around on her plate like a five-year-old to give the impression that she is eating it. People want to appear normal.

Q. Why have these disorders sometimes flown under the radar?

A. First, a swallowing disorder isn’t a disease, it is a disorder which manifests itself from one of over 30 medical conditions. Some of the more common underlying conditions that cause severe swallowing disorders include: neuromuscular diseases (e.g., Parkinson’s disease, ALS), head and neck cancer, stroke, head and neck trauma, birth defects, and accidental choking. Physicians are trained in their specialty and are focused on saving your life. Here again is where the heartbreak comes in: the physician or emergency responder accidentally intubates you incorrectly and damages your vocal cords, creating a swallowing disorder in the process. A vital, normal human who may recover from their injury may never be able to swallow normally again, may never be able to socialize, may live with this “mistake” for years, if not forever. The second reason is the population this affects. Although it literally can affect anyone regardless of age, race, and socio-economic background, the result is often similar. They are a hidden part of our society. Where the squeaky wheel gets the grease, this population is quiet. They are the silent minority.

Q. You consider yourself a top patient advocate. Can you explain why this is?

A. I see this disorder from all sides daily. The patient, the loving family member, the professionals who care for us, and myself. I know first-hand the impact this has had on my life and my relationships. Having had direct or tangential contact with over 500 people suffering from this disorder in the past three years provides me with a unique qualification and perspective. I understand the hardships, and I want to help. I wish we had more financial resources. With more resources, we could advocate longer, louder, and with greater impact. We do have great sponsors (including Cook Medical), partners, and annual-dues-paying members. But it is never enough, and there is so much more we could be doing.

Q. Tell me your own personal story as a cancer survivor.

A. I have a long complicated medical history. In brief, I was diagnosed with stage III/IV squamous cell carcinoma of unknown origin in April 2005. I went from being a successful program manager, managing contracts valued at one billion dollars, to a cancer patient. From mid-2005 to the end of 2008, I had 36 IMRT radiation treatments, 6 surgeries, and 8 different chemotherapy regimens. One surgery, referred to in the head and neck cancer world as salvage surgery, took 12 hours and moved body parts (bone, tissue, and muscle) around. I had 4 separate cancer recurrences during this time frame. My medical team at MD Anderson Cancer Center in Houston eventually used a personalized targeted therapy approach to save my life. This was in 2007, before people and the media were talking about personalized cancer therapy.

Q. How did your dysphagia awareness campaign stand out in 2016 from previous years?

A. As you already know, June is National Dysphagia Awareness Month. We hit a home run with raising awareness last year. In June 2016, we reached close to a quarter million people on Facebook, our daily “30 facts you need to know about dysphagia” was picked up by a dozen influential dysphagia leaders, and we had over 47,000 web page views which a new all-time monthly high and more than a 50% increase over the same period last year. Our staff and board members placed great importance on our June campaigns and I could not be more proud of them and what they accomplished.

Q. What are a few things we can be looking for during your NFOSD awareness campaign this year?

A. Last year, we reached over a quarter million people with our awareness campaign on our website and social media assets. This year, our goal is to find supporters to sponsor a “Photo Fact of the Day” for a 24-hour period of time on the NFOSD Facebook page. Each time the photo is shared, the sponsor pledges to donate a set amount of money, for example one dollar. If the photo is shared 42 times, the sponsors donates 42 dollars. The funds raised will be put towards dysphagia education, advocacy, and research.

1. Bhattacharyya, N. “The Prevalence of Dysphagia among Adults in the United States.” Otolaryngology – Head and Neck Surgery 151.5 (2014): 1-2. Pub Med. Web. 23 Mar.2017.

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