Binge-Eating Disorder

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    Community Voices

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    Sponsored By
    Josephine Bila

    Dear Doctors, There Shouldn’t Be a Stark Contrast Between How You Care

    Few things tug at our heartstrings more than sick kids. Turn on any cable channel after 7 p.m. and you’re likely to see at least one fundraising commercial featuring a doe-eyed child laying in a hospital bed. As someone who could have been featured in one of those commercials, I know what it’s like to grow up as a sick kid. The only difference was my condition, beta thalassemia major, started in infancy, can’t enter remission, and has no end-date or viable cure (beyond a perfectly matched bone marrow transplant or experimental procedure). Thalassemia is a rare genetic mutation that alters the way the bone marrow produces red blood cells. Instead of producing plump, donut-shaped red blood cells, it creates flat, useless cells that are unable to function as oxygen transporters. Since humans can’t live without red blood cells (or oxygen), thalassemia major patients remain alive by receiving red blood cell donations from healthy people. Imagine me, a cute little 3-year-old girl with big eyes, pigtails and tiny feet, sitting on a giant chair with tubes leading up an IV pole, to a gruesome bag of blood. Now imagine being a doctor or nurse whose entire career revolves around caring for 100 similarly adorable, button-nosed patients who are constantly in need of care. Practitioners are only human, so of course their emotions get triggered — and from a sick kid’s perspective, that’s a really good thing. The humanity I encountered as a child is something I think very few get to experience. Doctors were kind to me. Nurses laughed with me. Office administrators talked financial matters with my mom, but never let me leave without a hug or treat. Imagine being greeted with humor and respect every time you entered a hospital clinic or billing office. On regular treatment days, various members of the pediatric team would intentionally stop into my infusion room to say hello, offer a gift, or pat me on the shoulder in a show of approval. I felt cared for and maybe, possibly, loved. Transfusion days were full of games, friends, artistic projects, gifts, favorite foods, and compliments such as, “So wonderful to see you today, Josephine!” What’s really astounding is — I think they meant it. Fast forward more than 20 years, and my hospital experiences feel very different. I still get hooked up to an IV while sitting on a giant lounge chair where my feet don’t reach the floor. Only now, my doctor and nurse practitioner stop into my infusion cubicle and give me approximately two minutes to speak about any pain or malady I might be experiencing. Words often fumble through my lips if I don’t prepare my thoughts in advance, so I always write them down ahead of time. On most days, when the team asks how I’m feeling, I respond by saying “Everything’s fine.” After all, why should I bother sharing more when their canned response typically sounds like, “But, you look great!” or “That’s not what the research shows.” It’s such a horrible, hopeless feeling. Right now, I consider myself a dream client who’s desperate for quality customer service, but has nowhere else to shop. Fortunately, I do have wonderful infusion nurses who care about how I feel. They, along with the lab technicians, buffer my overall hospital experience. But I still can’t help but consider how different things were for me as a kid. My doctors would always believe me when I said I didn’t feel well. They’d investigate every symptom I presented, no matter how cute I looked. As a sick kid who has successfully become a sick adult and reached the fourth decade of her life, I get the impression that my medical team sees their job as done. The contrast in experience between pediatric to adult care has been very hard to come to terms with. I sometimes question myself and wonder if my fond hospital memories are the result of some sort of twisted nostalgia. That — or maybe present-day doctors’ practices are a symptom of society’s ever-increasing pace, spike in malpractice lawsuits, and health insurance policy interference. I don’t think society is to blame in every situation, though. I mean, how many adults enter a doctor’s care only to be told that their symptoms are imaginary? How many more are told, “You know, you’re at that age when…” If I could change one thing about adult practitioners, it would be their bedside manner. In other words, all medical practitioners should listen to and support patients as they speak about their experiences and feelings (without diminishing or dismissing them). They should stop insisting that a person’s health is based purely on their appearance, and encourage patients to meet other practitioners for a second or alternative opinion. Most important of all, since doctors typically are limited to brief appointments with a patient, they need to be present, both in body and mind. And while we’re at it, give your patients a pat on the shoulder, handshake or high-five once in a while. Don’t forget, adult patients need connection and comfort just as much as children do.

    Community Voices

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    Sponsored by
    Gail H
    Gail H @gail-h
    contributor

    The Condition I Didn’t Know Existed in People with Parkinson’s and Diz

    I’ve had symptoms of dizziness and lightheadedness for most of my adult life. I would experience extreme dizziness after I stood up, and the feeling that I was going to black out was always around me like a cloud. I tried to hide my symptoms at work, and I would spend most of the day sitting. These symptoms made my world smaller and smaller. I started staying in my house more and more. I started to avoid driving. If I was at the grocery store and the lines were too long, I would just leave. Staying home isn’t like me at all. I was an elementary school music teacher, and I play the recorder and harpsichord and conduct two choruses. I also have two wonderful children and two grandchildren. But I didn’t have the right vocabulary to talk about my symptoms with my doctor. I was diagnosed with Parkinson’s disease, a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands, 17 years ago. After I found out, I thought this dizziness and feeling like I was going to black out was just part of the disease. After I retired, I moved to Florida and started seeing a new neurologist who was very savvy. I told him about my symptoms, and he took my blood pressure sitting and standing. My previous specialist would only take it while I was sitting down. It turned out that I had a condition called symptomatic neurogenic orthostatic hypotension (nOH), which causes a significant drop in blood pressure when changing positions or standing. That’s why I kept having that feeling like I was going to pass out. I was so relieved when I found out my symptoms were something other than Parkinson’s. It felt like I wasn’t crazy. My doctor had me start doing things like drinking more water and adding more salt to my diet to help with my symptoms. Then, he told me about a clinical trial for a drug called Northera (droxidopa), which was being studied in people like me who have symptomatic nOH. I was so glad to know there was something I could try, to see if it would help manage my symptoms of dizziness and feeling like I was going to black out. So I decided to participate in the clinical trial. When I first started Northera, I saw my doctor every day or every couple of days to titrate my dose until we got it just right. I still do the non-medication things to help manage my symptomatic nOH, like carrying water everywhere I go, adding more salt to my diet (even though I don’t love salty food!) and sleeping with the head of my bed elevated. But Northera has helped relieve my dizziness and the feeling that I’m going to black out. I don’t experience those symptoms now when I stand up. For anyone reading this, know that Northera may not work the same for everyone, and you have to make sure you tell your doctor about any other medicines, vitamins and supplements you use, to make sure Northera won’t cause any side effects. My doctor was also very clear that I should take my last dose at least three hours before bedtime because it can cause high blood pressure when lying down, which could cause serious side effects, and if not managed correctly, could lead to stroke, heart attack or death. Be sure to talk to your own doctor about the potential risks of Northera. I want people to know that just because you have Parkinson’s, that doesn’t mean you can’t manage the symptoms of nOH. For a long time, I didn’t have the right words to describe what was happening to me, so I want to tell my story in case others don’t know how to talk to their doctor or what to ask for. USE NORTHERA (droxidopa) is a prescription medication used to reduce dizziness, lightheadedness, or the “feeling that you are about to black out” in adults who experience a significant drop in blood pressure when changing positions or standing (called symptomatic neurogenic orthostatic hypotension (nOH)) and who have one of the following: – Parkinson’s disease (PD), a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands – Multiple system atrophy (MSA), a Parkinson’s-like disorder with more widespread effects on the brain and body – Pure autonomic failure (PAF), a neurodegenerative disease that results in frequent drops in blood pressure upon standing – Dopamine beta-hydroxylase deficiency, a condition where the body cannot make enough of the hormones that help regulate blood pressure – Non-diabetic autonomic neuropathy, an inability to maintain blood pressure upon standing that can be caused by a number of rare diseases Effectiveness beyond 2 weeks of treatment has not been established, and your doctor will decide if you should continue taking NORTHERA. Important Safety Information Do not take NORTHERA if you have a known allergy to NORTHERA or its ingredients. NORTHERA may cause high blood pressure when lying down, which could lead to strokes, heart attacks, and death. To reduce this risk of supine hypertension, take your late afternoon dose of NORTHERA at least 3 hours before going to bed. Neuroleptic malignant syndrome (NMS) is a rare but potentially life-threatening side effect reported with NORTHERA. Call your doctor right away and go to the nearest emergency room if you develop these signs and symptoms: high fever, stiff muscles, movements that you cannot control, confusion or problems thinking, very fast or uneven heartbeats, or increased sweating. NORTHERA should be stopped immediately if NMS is diagnosed. If you have coronary artery disease, irregular heartbeat, or heart failure, NORTHERA may worsen the symptoms of these disorders. Call your doctor if your symptoms become worse. NORTHERA may cause allergic reactions. Stop taking NORTHERA and contact your doctor right away, or go to the nearest emergency room if you experience any signs or symptoms of an allergic reaction such as: fast heartbeat, nausea, vomiting, swelling, trouble breathing, hives, or rash. NORTHERA contains tartrazine (FD&C Yellow No. 5), which may also cause an allergic reaction, especially if you have had a reaction to aspirin. The most common side effects with NORTHERA are headache, dizziness, nausea, and high blood pressure. Taking NORTHERA with other medications may cause side effects. Tell your doctor if you take prescription or over-the-counter medicines, vitamins, or herbal supplements. You should not breastfeed during treatment with NORTHERA. If you plan to become or are currently pregnant, talk to your doctor as it is not known if NORTHERA could harm your unborn baby. Take NORTHERA the same way each time, either with or without food. If you miss a dose of NORTHERA, take your next dose at the regularly scheduled time. Do not double the dose. Please see the full Prescribing Information, including Boxed Warning for supine hypertension, or go to www.NORTHERA.com. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. ©2019 Lundbeck. All rights reserved. DRX-B-100300