15 minute read
Alea Clark: Columbia University Medical Center
Columbia University Medical Center
Alea Clark
Many in the United States have heard, “Prevention is the best medicine,” an expression that seems self-evident, yet may have been forgotten considering the drastic increase in rheumatological and immune-mediated illnesses in the United States in recent years. Stunningly, approximately 1 in 4 American adults has already been diagnosed with arthritis or other rheumatologic illness. The CDC has predicted that, by the year 2040, about 78 million US adults (26% of the population) are expected to be diagnosed with a rheumatic disease. This Service Scholar Project is dedicated to assisting pediatric rheumatology patients through Columbia Hospital’s Rheumatology branch and the Charla de Lupus organization. In order to target the issues of lack of peer support and insufficient focus on preventive care, this project involves the creation of informational pamphlets on preventive care and mentoring children and families with these rheumatological conditions via Zoom.
Rheumatologic diseases encompass a wide variety of diseases that involve dysregulation of the immune system. The most common kind of rheumatological diseases are autoimmune diseases, a spectrum that encompasses conditions such as Type 1 Diabetes (T1D), Rheumatoid Arthritis (RA), Multiple Sclerosis (MS), Lupus, Celiac Disease, and Psoriasis. Although each disease has its own distinct symptoms, many rheumatological diseases present general inflammatory symptoms such as pain, swelling, recurrent fevers, brain fog, and fatigue. According to the Arthritis Foundation, there are over 300,000 children living with juvenile arthritis in the U.S. Shockingly, there is a stunning shortage of doctors trained to diagnose and treat these patients, with only 420 total board certified Pediatric Rheumatologists in the United States attempting to treat a growing number of children with rheumatic diseases. An estimated 75% of children with arthritis are not able to see a rheumatologist, as there are so few specialists in this field; nine US states don’t have a single Pediatric Rheumatologist in practice. As a result, many rheumatology departments are overwhelmed, and many children often go undiagnosed or otherwise lack the care they need. Pediatricians who aren’t specialized in diagnosing rheumatological and immunological illnesses may not recognize the inflammatory symptoms that patients present, and may instead assume the child has an infection of sorts when complaining of “growing pains,” or possibly even exaggerating their pain and discomfort. The symptoms presented in these diseases often make it difficult for children with rheumatologic conditions to function in a normal school environment, and children who are unable to obtain the modifications they need often face prejudice from teachers and peers, and/ or academic difficulties as a result of repeated illness and many days of missed school. According to research published in Science Direct, the decline in academic performance at a global level is associated with the rise in chronic disease in children, adolescents, and young adults. For children, the social stigma associated with these diseases in pediatric patients can also lead to isolation and exacerbate anxiety and mental illness, since their peers often don’t understand what they’re going through. The impact on their families is also often extreme, as parents may struggle to maintain their jobs, care for their sick children and pay what can become exorbitant medical bills.
One critical element that patients and families can control often has a tremendous impact on the quality of life and management of many of these rheumatological and immune-mediated diseases. Although this may be surprising given the recent global pandemic, chronic diseases have far outpaced infectious diseases as the leading cause of mortality, accounting for a shocking 72% of all global deaths in 2016. Like all chronic illnesses, rheumatological diseases are often at least partially dependent on environmental factors, and altering lifestyle habits such as diet, sleep, exercise, and hydration can have a significant beneficial impact on the morbidity, management and disease progression of these conditions. However, since the structure of the U.S. healthcare system heavily revolves around curative treatment rather than preventive approaches, these preventive measures are often underemphasized in favor of more expensive options such as heavy medications and surgical procedures which become inevitable once the cascade of inflammatory damage becomes entrenched. This is not to say that these curative methods aren’t important: in fact, they can provide life-changing and even life-saving support; however, combining these traditional curative approaches with preventive measures such as healthy diet and frequent exercise often reaps far more benefit for patients with these diseases. Furthermore, given the lack of accessible medical expertise in these illnesses, preventive approaches become a critical part of many rheumatological practices. Therefore, advocating the use of preventive measures is crucial in helping patients with rheumatological diseases overcome their symptoms and lead higher quality lives.
For my Senior Service Project, I was asked by the Chair of the Pediatric Rheumatology department at Columbia University Medical Center in New York City to assist with creating education materials and support services for pediatric rheumatology patients. The reason I was thrilled to be asked is that I have personal experience with this growing challenge, actually: when I was three years old, I was diagnosed with a rheumatological condition known as Systemic Idiopathic Juvenile Arthritis (SJIA). They gave my condition that label only recently; doctors are still unsure of the mechanisms behind the disease, as indicated by the “Idiopathic” label on the condition. The first few years of my life were marked with severe inflammatory symptoms; my joints would swell and turn dark purple, and I would get fevers that would reach up to 106ºF. The doctors ran all sorts of tests, but still didn’t understand what it was or how it worked. A series of medical professionals tested a plethora of hypothetical diagnoses, from infectious to oncological sources, and a profusion of treatments, which were often ineffective, and occasionally made the disease worse instead of better. Additionally, the treatments were not only ineffective and the tests inconclusive, but these procedures were often incredibly painful; they included all sorts of procedures such as blood tests, injections, bone marrow biopsies, skin biopsies, electrical shocks, and even a spinal tap without anesthesia. Eventually, the medications put such a massive strain on my liver that I developed fatty liver disease. Combined with the fact that I simultaneously developed pre-diabetes as a part of my medical issues, I was at extremely high risk for liver failure. Luckily though, with strict discipline and taking secondary preventive measures, I was able to reduce the severity of my symptoms, and I am now able to live an entirely normal, active life.
Had I not adhered to the preventive measures offered to me, including alteration of my diet and addition of regular exercise, taking specific supplements designed to mitigate the negative effects of both my disease and the medications designed to treat it, the progression of my illness could have been devastating on my entire system. Thankfully, my rheumatologist consistently encouraged me to pursue preventative approaches as we were also pursuing all of the traditional medical interventions. She consistently repeated to me the benefits of regular exercise and suggested I try an elimination diet to remove further inflammatory triggers for my immune system. With the help of several other specialists in endocrinology and gastroenterology, I was offered a variety of supplements in addition to my medicines that helped my system regulate its function and also undo some of the liver and other damage that was inevitable with the amount of harsh anti-inflammatory and immune modulating medications. None of it was easy, I was much younger then, and it was often very difficult to accept such restrictive measures when class snacks and special treats were served to everyone but me. At the time, I know it would have been such a meaningful support to be able to speak to someone older who had been through the same obstacles and had overcome them.
When Dr. Lisa Imundo at Columbia asked me if I would help her with this project, I was thrilled to be asked and elated to be able to help other children that were going through the same challenges as I had. Helping them learn that they can also take control of their health and make a difference in how they can function and feel every day is incredibly invigorating and empowering. In many cases with patients at Columbia, parents also need to be educated on the benefits of these preventative measures, which seem so simple, yet require a significant investment in time and patience to iterate repeatedly, as well as tremendous discipline to stick with the diet and exercise. It is hard to explain to anyone without chronic illness how challenging it can be to will yourself to exercise even when you are so exhausted, you cannot imagine lifting your own weight and your joints are all but locked in place from stiffness and inflammation. Understanding that movement is such an essential part of how your body functions helped me appreciate that the pain in this case had a gain -- that it not only helps reduce inflammation throughout the body, but that it also improves your liver function, regulates your endocrine system and engages your lymphatic system productivity. Sustaining willpower is even harder with dietary considerations, which can have a dramatic impact as well. Removing foods and substances that can activate an auto-inflammatory response can actually reduce arthritis, as well as the likelihood of many downstream complications like cardiovascular inflammation and endocrine dysfunction.
Working with the department of rheumatology, I was tasked with first creating education materials and pamphlets to offer to pediatric patients and their families. The first pamphlet we created was created to provide pediatric patients with information and tools to manage stress - at the start of this project over the summer of 2021, the experience of most New Yorkers living through the pandemic was very challenging given the physical restrictions and access for residents to exercise outside of their small apartments. Unlike most Ensworth students who live in homes with yards and access to open parks, New York City was closed for most things, making exercise even more difficult, and access to healthier food choices more difficult. New York City banned its traditional street vendors and markets that used to sell inexpensive, fresh, locally produced fruits and vegetables for fear of COVID-19. The pamphlet explained the difference between stress and anxiety, and provided concrete methods of reducing stress with diet, exercise and consistent sleep hygiene.
The second pamphlet we created was dedicated to encouraging exercise for pediatric rheumatology patients, and explained the benefits of consistent, low intensity exercise not only for the specific benefits of reducing inflammation, but also for the tremendous benefit of exercise for reducing stress and anxiety, both of which are known to exacerbate rheumatological illnesses. Regular exercise can also reduce fatigue and improve joint flexibility and strength. According to the Mayo Clinic, “exercise is one of the key treatments to help reduce the disability often associated with rheumatoid arthritis, (and can also) reduce fatigue and ease depression.” [] Dr. Imundo asked me to leverage my own experience in creating these pamphlets, which included original artwork for both, so that they are colorful, with clear, easy to understand explanations that would appeal to a range of pre-teen and teenage patients. I drew on my own experience in writing the text, recognizing both that some days will be harder than others, and that it is truly a game of inches when one is trying to overcome a rheumatological illness.
Our current, third pamphlet in the series, is still under way, and is focused on dietary considerations and strategies for finding the optimal dietary plan for each patient. Given the vast differences in food allergies and sensitivities for each person, and the likelihood of certain vitamin imbalances with many rheumatology patients, it is important for families to work through a plan, ideally with a nutritional specialist if possible. When access is not possible, the pamphlet encourages patients to favor whole, natural foods rather than packaged foods, and especially to reduce the consumption of fast sugars.
I have also been asked to work with a joint venture between Columbia and the Hospital for Special Surgery to speak to patients and their families directly to serve as a resource to help educate them. I hope to continue working to support pediatric patients with illnesses like mine, both to help every child and family that I can reach, but also to give back to the many doctors and medical institutions that worked tirelessly to help me when I needed them most.
WORKS CITED “Addressing the Pediatric Rheumatology Shortage: Arthritis Foundation.” Addressing the Pediatric Rheumatology Shortage | Arthritis Foundation, Arthritis Foundation, 2021, https:// www.arthritis.org/advocate/federal/addressing-the-pediatric-rheumatology-shortage. Anderson, Elizabeth, and J. Larry Durstine. “Physical Activity, Exercise, and Chronic Diseases: A Brief Review.” Sports Medicine and Health Science, Elsevier, 25 Sept. 2019, https://www. sciencedirect.com/science/article/pii/S266633761930006X. “Autoimmune Diseases.” National Institute of Environmental Health Sciences, U.S. Department of Health and Human Services, 9 Feb. 2022, https://www.niehs.nih.gov/health/topics/ conditions/autoimmune/index.cfm. CDC Staff. “Arthritis Related Statistics.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 12 Oct. 2021, https://www.cdc.gov/arthritis/data_ statistics/arthritis-related-stats.htm. CDC Staff. “Rheumatoid Arthritis.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 18 May 2021, https://www.mayoclinic.org/diseases-conditions/rheumatoidarthritis/symptoms-causes/syc-20353648. Jayatilleke, Aruni. “Prevalence of Rheumatic Disease.” Simple Tasks Campaign, American College of Rheumatology, 18 Sept. 2017, https://simpletasks.org/prevalence-of-rheumaticdisease/. Mayo Clinic Staff. “Rheumatoid Arthritis: Is Exercise Important?” Mayo Clinic, Mayo Foundation for Medical Education and Research, 31 July 2020, https://www.mayoclinic. org/diseases-conditions/rheumatoid-arthritis/in-depth/rheumatoid-arthritis-exercise/ art-20096222. TJ;, Barbour KE;Helmick CG;Boring M;Brady. “Vital Signs: Prevalence of Doctor-Diagnosed Arthritis and Arthritis-Attributable Activity Limitation - United States, 2013-2015.” MMWR. Morbidity and Mortality Weekly Report, U.S. National Library of Medicine, 10 Mar. 2017, https://pubmed.ncbi.nlm.nih.gov/28278145/. Willett, Walter C. “Prevention of Chronic Disease by Means of Diet and Lifestyle Changes.” Disease Control Priorities in Developing Countries. 2nd Edition., U.S. National Library of Medicine, 1 Jan. 1970, https://www.ncbi.nlm.nih.gov/books/NBK11795/.
Reflection
Working with the Pediatric Rheumatology department at the Columbia University Medical Center (CUMC) in New York City on this service project for the past year has been an amazing experience that has given me the opportunity to appreciate how important our daily choices are to maintaining health and wellness. Although I have given speeches on arthritis and auto-inflammatory diseases to large audiences of children my age in New York City in years past before we moved to Nashville, none have paralleled the fulfillment and meaning that this opportunity has provided. Not only have I learned so much about what it takes to provide care for pediatric patients with chronic rheumatological diseases beyond lab tests and medications, but I am also deeply grateful for the opportunity to give back in my own way to help support the medical experts in the field of rheumatology who helped me through my medical challenges.
Helping the rheumatologists and social workers at CUMC and the Hospital for Special Surgery (HSS) build an education program has been more rewarding than I could have imagined -- it is so fulfilling to know that this work can empower patients and their families to make lifestyle changes that can drastically improve their outcomes, especially over the long term. Taking ownership of my own diet and exercise choices many years ago was incredibly challenging at the time, it seemed impossible, but with patience and encouragement from those caring for me, I was able to see small, consistent improvements over time. In conjunction with the series of educational pamphlets in process, the peer mentoring program established by the joint effort of CUMC and HSS is destined to make a difference for many pediatric patients and their families who often find heavy financial, physical and emotional demands in caring for their loved one. I am honored to be given the opportunity to help and mentor children who are working to overcome the same obstacles that I did. There is an ever-increasing number of medical studies providing concrete evidence that making healthy choices for diet and exercise is essential in managing and alleviating the damage from all chronic diseases. For children especially, managing a pediatric patient’s chronic condition early enough to reduce inflammation can halt the many deleterious effects of auto-inflammation in the body that become irreversible with time.
It was stunning for me to learn not only that the prevalence of rheumatological illness is growing globally at an accelerated rate each year, but also to appreciate the tremendous shortage of board-certified rheumatologists in the United States to care for these patients. It was a staggering realization to discover that there are only 420 pediatric rheumatologists in the US to treat 300,000 patients, and that almost 20% of our states do not have even one single practicing rheumatologist. This made me realize that creating realistic, sustainable preventive strategies and promoting awareness of these at a national and/or global scale, if possible, is an essential part of the toolkit for battling these diseases. Educating rheumatology patients and families fully to enable them to take control of their lifestyle choices can significantly reduce the severity and improve quality of life for both patients and families dealing with these chronic illnesses. I hope to continue to work with CUMC and HSS in this regard, both with crafting materials and by working with individual patients and their families wherever I might be helpful.
