Typically, on the raw food diet, about 75 to 80 percent of what you eat each day will be plant-based foods never heated above 115 degrees Fahrenheit.
Sometimes it’s denial that causes unfortunate decisions. Throughout my medical journey, there have been many options for treatment. Soon those options faded, leaving only treatments unapproved by the Food and Drug Administration. These treatments were diets, which we often find appealing because they make us want to look, feel and simply be better. In many cases, diets are necessary – and the one thing that can save an individual from painstaking medical experiences. Hundreds of diets are on the market, and many come with catchy appeals. When a diet can save someone, is it worth a try?
It all began one day when we were running out of allopathic treatment options. I have ulcerative colitis, and my disease was becoming more and more active by the day. Our final option was to get a colectomy (full removal of the colon). This was a defeating option because there is no “colon transplant,” so once it’s gone, it’s gone. My mother called a homeopathic (natural-based healing) office, and thus began our adventure to solve my unsolvable disease. The homeopathic doctor – who I’ll call Dr. Smith to preserve her privacy – told us of all her great adventures treating patients and supposedly curing their problems. She was in shock that I hadn’t tried diets seriously, and as a result, I was prescribed numerous diets that would hopefully cure my disease, if not put me into remission.
“Sugar,” I recall her saying. “This supplemental drink you’re having right now has 19 grams of sugar. Sugar is inflammatory, and you’ll be regulating your sugar intake with natural sugars only from now on.”
I didn’t complain because, after years of drinking supplemental drinks, they caused me to have more nausea than a pregnant woman. But then she went on.
“Gluten is also not going to be part of your diet because it will ultimately roll up into a ball and sit in your stomach, and that’s not good for your ulcers,” Dr. Smith said. “You’ll also need to refrain from excessive salt and oil for the next couple months.”
My mother was all up for it, and I walked out of the office with my jaw on the ground. I couldn’t believe such a diet could even be remotely possible! This experience foreshadowed what was to come in the next couple years. My mother and I went to the nearest nutrition store and bought everything from cardboard to plain plastic and I ate it, simply horrified. So the diet began, and I was craving food I wouldn’t have even considered prior to being introduced to the diets. I was on numerous diets at once, but refraining from certain foods was making me feel crazy.
The gluten-free diet was flaky and tasteless, and it nearly brought me to insanity by the end of the second month. Combined with additional restrictions, I lost weight quickly. I didn’t have an appetite then anyway, and having to refrain from essential taste-bud pleasers made me choose to skip meals instead. When my weight continued dropping and my health didn’t improve, we stopped the diet. We went back to Dr. Smith once more to get her opinion. She talked about a no-processed food diet, which was manageable, although not ideal.
“I will also be prescribing you homeopathic medicine that will help on top of the no-processed food diet,” she said convincingly. “You see, processed foods contain chemicals that alter the body system.”
We tried it, and unsurprisingly, nothing had happened after a few months. At the same time, I was still on allopathic medications. Unfortunately, my parents and I were in severe denial that I needed to get my colon removed, and we were going to try anything to save it. We stopped going to Dr. Smith, and my mom searched online for anything that could revive my body. She finally came across a renowned raw food diet blog, which ended up leading to a year and a half of pure misery and resentment. The raw food diet is a drastic option that, my mom told me, has brought many people into remission.
At one point, I remember asking, a bit sarcastically, if I could get some real food to eat. “I washed some peaches and plums,” my mom said. I ate them, and they were actually really delicious, but then I was presented with steamed sweet potatoes and avocados – and no salt, which prompted my complaints. The next day, I was given fiber-free vegetables and fruits, and they were all in raw forms only. No baking, just steaming or freshly sliced. During this period, my mother frequently found me sneaking in the cabinet to have a gluten-free pretzel or two. We were terrified about what would happen if this diet didn’t work.
Eventually, my mom and I went to a health center in California that offered natural-based healing. We made the extreme decision to visit this center because the allopathic treatments had failed me, and there was nothing left to try before the permanent, final option. At the health center, I would eat a simple diet consisting of no salt, sugar or overly cooked items. The facility was mostly based on the raw food diet, but there were also slightly cooked meals for patients like me who couldn’t tolerate uncooked vegetables.
Soon after my arrival, while exploring the neighborhood, I remember stealing cookies from an open house because I was so desperate for food.
Every day while I was at the center, the doctor took vitals such as blood pressure and measured my weight. Each day I lost weight, and each day we became increasingly nervous. When I arrived at the health center, I weighed a little over 6o pounds, and by the end of the second week, I was 57 pounds – far too little for a 13-year-old either-grader.
The weight loss became a concern for my dad, a doctor, who was trying to monitor my health long distance, as well as my doctor at Riley Hospital for Children, who wasn’t overly supportive of this extreme natural food diet but thought it was OK to try. I had to keep myself extremely mentally strong because my body was going through a withdrawal stage of all the chemicals and “bad stuff” in processed foods. But still we continued to wonder – and hope: Was it too late to reverse my disease? Could it even be reversed?
During a class at the center, I remember one physician saying: “No salt. No sugar. No oil. No processing. All natural.”
I thought to myself: Do I want to live like this for the rest of my life?
Ultimately, it became clear that the raw food diet wouldn’t control my disease, and my mom and I left the health center earlier than expected.
My weight was too low at the time – 57 pounds was beyond unacceptable. Before we headed out of California, we went to a restaurant and I had a buttery, salty grilled cheese sandwich that couldn’t have tasted any better.
Trying these diets took two years, but it did give my family a sense of comfort; we knew we had tried everything before deciding to have my colon removed. Plus, we learned a lot about the amount of processed foods that surround us and how natural diets are proven to keep people considerably healthier. Something good always comes out of a negative situation. And even though this diet was just buying time, I learned important information about food intake that’s impacted my food choices to this day. I’m still grateful to have tried the raw food diet and encourage anyone to try their last options before deciding to undergo their final option – be it a colectomy surgery, like me, or something else.
‘I, the same person who a couple years ago had difficulty putting one foot in front of the other without feeling dizzy, could climb a difficult hill and feel great while doing so.’
Regret: the fine line between an emotional breakdown and the feeling of hopelessness. Those of you with or even without a chronic illness know exactly what it feels like to regret.
I am a freshman at Indiana University and was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease, when I was 6. Truthfully, I have missed out on a normal life, but I have been equally fortunate with so many opportunities to travel and expand advocacy efforts for individuals suffering from inflammatory bowel diseases and other chronic conditions.
When I find myself regretting my medical decisions, I end up in an indestructible bubble of negative thoughts. Regret that surrounds a chronic illness can truly be the one emotional strain on top of insurmountable physical obstacles. We often regret our medical decisions; for example, whether we should have agreed to that irreversible surgery or not. I thought hard about my surgery, but it’s been difficult – even now – and here’s why.
I was a freshman in high school when my family and I decided it was finally time for the last resort we had: to have my entire large intestine removed (a colectomy surgery). It was an incredibly difficult decision, because the large intestine is irreplaceable. While many medical doctors have classified the colectomy surgery as a cure, I can testify that it is absolutely not. I live with inflammation and still undergo procedures, frequent doses of antibiotic treatment and an incredible amount of fatigue. Not having a colon affects my daily tasks, and as a first-year college student, it can be frustrating even as I consistently put a positive spin on each situation.
Here’s what to recognize when dealing with regret, especially relating to your chronic illness:
1. You just cannot control some circumstances.
The decisions I made on my own often loomed over me as I regretted not trying hard enough. One instance, in particular, was when I had a suppressed appetite due to active inflammation and medications. I was put on a peripherally inserted central catheter, or PICC line, for nutrition, and I often blamed myself for not trying hard enough to eat. While I knew it wasn’t my fault, every time I went in public with my PICC line, I would regret my “decision” to not eat. It was emotionally stressful for me when I had to explain my PICC line. I often felt that what was happening to me was because I did not try hard enough or hadn’t kept ahead of my medical responsibilities.
2. Don’t stand in the sticky sand of despair.
During my nearly 13 years of living with ulcerative colitis, I’ve been prescribed lots of medications – many that cause symptoms almost worse than the disease itself. There was a 6-month period where I refused to take my lowered dose of six large capsules a day (down from an original eight capsules) because I felt so good and normal without them. That period where I did not take medications could have led to what came ahead: a life with severe inflammation. It used to really bother me that I didn’t take my medicine for that long. Without being self-deprecating, I quickly learned that it was unnecessary for me to think about one topic instead of focusing on the positive and trying to fix my situation at hand.
3. Rest, and don’t regret it.
Still to this day, every time I miss a class in college, I feel incredibly awful. Earlier this year, I was paralyzed with pain in my abdomen. I had to skip class and was upset because I didn’t know how to explain it to my professor or if he or she would be understanding. Not to mention: How do I explain to the person sitting next to me, who I will seek help from for notes, that I was sick when I clearly was not visibly sick? As a chronic illness advocate, I sincerely believe in educating people about your chronic illness, but it is difficult to do so for the smallest reasons such as asking for notes. The same way I felt bad about missing a class, many chronic illness sufferers feel guilty about missing an event and stress about how to tell someone they were sick. Never feel guilty about resting, because it is likely what you need most.
4. Let yourself relax and experience joy.
My mom, dad and I took a trip to hike this summer. While I was climbing up a very steep hill that my father pushed me to climb, I realized how far I had come. It was incredible. I, the same person who a couple years ago had difficulty putting one foot in front of the other without feeling dizzy, could climb a difficult hill and feel great while doing so. It is absolutely necessary for you to get away from your comfort zone and experience nature or whatever may relax you. Abandoning yourself in something that you really love and enjoy can be more healing than anything else. Living with a chronic illness is not easy, and you certainly deserve it.
I can’t recall what it felt like to not have ulcerative colitis and its consequences, and I’m OK with that. In the most positive context, I’m OK with having missed class field trips and birthday parties. I’m OK with the physical pain that I have faced and will face. But most of all, I should feel OK with the medical decisions I have made, and not let regret steal joy – or let it do the same to yours.
My high-school experience was amazing and unforgettable. After living with ulcerative colitis for more than 12 years, the most valuable thing I learned is that absolutely anything is possible.
Some would say I am a success story, considering that after living most of my life with severe ulcerative colitis and resulting complications, I was able to graduate as a part of the top-20 of my class of 600. But these past four years in high school have been my choice to live like I didn’t have ulcerative colitis. My “successes” and “failures” in high school have been driven by the idea that colitis would be a part of me, but I would not be a part of it.
My detailed story with ulcerative colitis can be found here.
Recently, I was selected as a Coca-Cola Scholar and an Eli Lilly Scholar, meaning my college experience is paid for. Behind this scholarship is an unforgettable journey of triumphs and defeats. I was told, when my major flare-up started in sixth grade, that each day would be new and that I would need to take it easier than my classmates. I didn’t understand why at the time, but as my disease progressed, and as I started calling the hospital my home, it became apparent. Instead of letting my disease be a reason for me to get out of some assignments, I began to feel a sense of competitiveness with my disease – I would not let it slow me down. And so I didn’t. Throughout high school, I would take tests the morning of a procedure that required me to remain on a liquid diet for 24 hours, and I would finish homework before I was called into procedures requiring anesthesia. “Why are you doing this to yourself?” my parents would ask, but it was a sort of need for me to prove that ulcerative colitis did not hold me captive. For me, graduating high school at the top of my class is not only an achievement, but also proof that ulcerative colitis did not keep me from my goals for so many years. Here is some advice I wish I had and what I have learned throughout high school.
Find your own way around, because you will have to be persistent to get opportunities.
When I came back from being severely ill, I faced a degree of unfair treatment my freshman year. I really wanted to become an advocate for individuals with chronic illnesses, specifically inflammatory bowel diseases, and to do that I thought I could go to my school as a starting point. When I kept getting denied due to my inability to be at school often, I knew that the only way for me to make a difference for individuals with chronic illnesses would be by myself. About three months after my colectomy surgery, as a freshman, I started the “Crohn’s and Colitis Teen Times,” now a nonprofit that serves individuals with chronic illnesses around the world. I sought out opportunities beyond my school, but what was unfortunate was that despite my explanation and my increasingly better resume, I was still not chosen for any opportunity without a fight. The point here is that oftentimes your chronic illness will seclude you from society, and it is up to you to build yourself and follow your passions.
Your illness cannot be your excuse.
In middle school, many of my teachers tried to make the workload a bit less strenuous due to my partial schooling and deteriorating health. In high school, however, everything started to count and I began my journey of working as hard as my peers. After all, I took the same Advanced Placement tests and standardized tests and had to get the same scores – even if I did not have the same amount of sleep or even if I was just a couple of weeks out from a major surgery. Most chronic illnesses are invisible, and with that it is more difficult to explain your condition and receive the same empathy as someone who is visibly sick.
Share your story.
I never spoke a word about my disease until my freshman year – my entire life my best friends were the only ones who knew I suffered from ulcerative colitis, but I only told them a fourth of what I actually went through. It is imperative to tell others what you are going through so that you are able to explain why you cannot participate in something or are turning in an assignment late – because you will undoubtedly receive those questions.
It is quite impossible to describe how many times my sickness tested my mental ability to keep pushing. I still remember when I returned home from my first major surgery: the removal of my entire large intestine. Coming home with an ileostomy bag, I experienced a huge physical adjustment, but almost a week after I returned I took finals that I had missed due to surgery. Looking back, I was crazy for taking those finals while recovering and on pain medications. Remain resilient, because those are times that will pass, but a slip-up in your performance will stay. With that being said, pay significant attention to your health.
Keep your health above your goals.
While it seems as though for much of my high school I didn’t prioritize my health, I strongly suggest focusing on yourself before school. Some of the above advice may say the contrary, but truly pay attention to yourself before your tasks. The first step is fixing you, and I was lucky enough to have my parents constantly reminding me of this.
Stay passionate, focused and happy with what you have. Living with a chronic illness is difficult in a fast-paced society. Overcoming your obstacles with success just takes a little determination and grit to find yourself somewhere that was once unimaginable.
When I was diagnosed with Ulcerative Colitis at age six, I did not know the severe impact it would have on my future abilities. Collectively, two diseases, Ulcerative Colitis and Crohn’s Disease are known as Inflammatory Bowel Diseases (IBD). Ulcerative Colitis causes ulcers in the large intestine, which in turn affects the entire body. I was diagnosed at a young age, and thus my disease was incredibly aggressive. There are currently no known cures, and while the incidence of IBD rises, approximately 1.6 million Americans are suffering—including around 30,000 people in Indiana alone. Increasingly, the younger population is being diagnosed, and with that I felt the need to start the Crohn’s and Colitis Teen Times, a nonprofit organization that provides support to teens and adults suffering with IBD and other chronic conditions.
One of my inspirations, Cory Lane, who passed away with Crohn’s Disease and Osteosarcoma suffered a many years with Crohn’s. The treatment that is currently available is great for disease management, but it comes with side effects as well. Often times treatment and research is not focused on for IBD, because the two diseases are in most cases not necessarily directly deadly, but there side effects can be, Namely some treatments and procedures that can lead to diabetes, infections, cancers, and a multitude of other chronic conditions.
Financially, IBD is extremely expensive for patients and caretakers. It is estimated that IBD treatment costs around $11 billion to $28 billion every year. The social, emotional, and physical burden is thus accompanied by the financial burden.
Students often miss school, because of how severe the disease can become during flare-ups (periods of active inflammation). For me, attending school was difficult as I had several surgeries, which took a part of normalcy away from my family for a few years during my long and severe flare-up; I spent quite a bit of time in the hospital. If only researchers would be able to find a medication that prevents life-altering surgeries and hospital admissions, it would ease financial burden of patients but also save healthcare system a considerable amount of money. Insurance companies are able to help cover prescription drugs, and for many people this is the best option because the cost for surgery and hospital admissions adds up.
Biologics are new drugs available for IBD treatment, and they have proven to reduce symptoms and help patients go in to remission. These medications also come with negative side effects, but this medical breakthrough represents a monumental step in the fight against IBD, and gives hope that we are closer to finding an overall cure. It is imperative that researchers continue to study medications to test the safety and produce better results. We need to support drug companies working on these medicines so they may be able to find a safe and effective treatment option. We need to work together to accomplish this potentially transformational treatment.
While drug companies spend time and money trying to discover new medicines and cures, many ideas do not come out of the research phase. However, the medicines that are actually developed are unable to be prescribed to patients due to numerous clinical trials and tests. Only 5% of new medications are actually available for the improvement of patients. The length of time—15 years is extremely long for the medicine to go from a revolutionary idea to a medical breakthrough.
Therefore, we must do our part to help companies in their fight to save the quality of life for many. The cure for ulcerative colitis and Crohn’s Disease will not be possible without the research that companies conduct. Medical innovation is absolutely necessary, for people like me, and for others suffering from inflammatory bowel diseases.
My journey to becoming a Coca-Cola Scholar is as unique as is for each Scholar, but for me this scholarship proved to be a defining moment after years of physical and mental recovery.
Just like rainbows come after rain, miracles come after struggles.
For me, this major obstacle began when I was six years old. I was diagnosed with Ulcerative Colitis, a chronic inflammatory bowel disease that affects the entire body. In middle school, I attended classes on a part-time basis and could barely walk up the stairs by myself. Emergency situations followed as my bone marrow stopped working from medications and my body began deteriorating. As a 9th grader, I weighed 60 pounds, was fed through a PICC line, and went to the hospital weekly for infusions. My large intestine was removed, and several surgeries and procedures followed.
That same year, I lost my best friend to Crohn’s Disease (very similar to Ulcerative Colitis) and Osteosarcoma. Before he passed away, we both felt the need for more advocacy for individuals with chronic conditions. The creation of a 501(c)(3) nonprofit, the Crohn’s and Colitis Teen Times, came soon after.
Now, three years later, I blog for U.S. News (often featured on Yahoo! News and the Huffington Post), and a United Nations Alliance. Furthermore, I serve as a motivational speaker at corporate events, leadership conferences and Children’s Miracle Network-sponsored dance marathons.
This past weekend, I was able to meet incredible Coca-Cola Scholars who have a similar drive to overcome struggles they have endured. I’ve been to many camps and conferences, but Coca-Cola Scholars Weekend in Atlanta was by far the greatest and most meaningful experience I’ve ever had. Here’s a quick recap.
My fellow Scholars arrived, and we all broke the ice pretty quickly over lunch. Soon after, we dressed for the banquet and received a warm welcome from Mark Davis, president of the Coca-Cola Scholars Foundation. The highlight of the day was to hear David Rubenstein, arguably one of the greatest and most genuine philanthropists for America, speak about his journey to work in the White House and recently purchase a Magna Carta for the country, rising from a very modest background. On Thursday, I learned that it’s OK to fail, and to accept failure gracefully.
The Leadership Development Institute formally started and we began discussions with small groups of Coke Scholars and a mentor. Afterwards, we visited the Center for Civil and Human Rights in downtown Atlanta, where we heard the CEO Derreck Kayongo speak about his personal journey with human rights and why he founded the Global Soap Project. On Friday, I learned that empathy can and should be applied to every situation and to every person’s challenging situation. I have often written about how powerful empathy can be, but after visiting the Center for Civil and Human Rights, it was apparent that the majority of the population is not aware of the dramatic fight for civil rights that is occurring in developing nations.
Saturday was the last day of our Leadership Development Institute, and one I will never forget. What was different, overall, about this leadership development program was that it focused more on personal connections. After parting from our small groups, we visited the World of Coca-Cola, where I tried every single flavor (including Beverly) and enjoyed getting to learn about the philanthropy of Coca-Cola and how much they truly value giving back to the community. Soon after, we departed to do a community service project for Parklane Elementary School, and were able to do hands-on activities that promoted reading and making the school a more conducive learning environment.
Whether it was consistently losing at a game of spoons, playing Cards Against Humanity well into the night, or pulling my first all-nighter, Coca-Cola Scholars Weekend was a weekend that will go down as one of the best three days of my life. A few days later, and I still have nostalgia of the experiences, and most of all, the inspiring and future world-changing people I met.
Coming back from Scholars Weekend, I am even more motivated to keep giving back and set my goals even higher. I am currently undecided as to which college I will attend, but will most likely study international relations (diplomacy) and public policy. I’m currently working towards creating a first-of-its-kind national leadership conference for teenagers suffering from chronic illnesses. I have also begun training to climb Mt. Kilimanjaro in Tanzania to show the world that chronic illness really cannot define your abilities.
One of the greatest things I have learned, however, is that it is possible to create a family in three days. I have felt personally connected to all 149 Coca-Cola Scholars, whether I had an opportunity to talk with them or not.
So cheers to the most genuine and inspiring group of people I have ever met: the class of 2016 Coca-Cola Scholars. And cheers to Coca-Cola for believing in us all and empowering us to make an even bigger impact together.
Sneha Dave is a 2016 Coca-Cola Scholar and senior at Center Grove High School in Greenwood, Indiana, who founded The Crohn’s and Colitis Teen Times a newsletter designed to support teens with inflammatory bowel disease. She is a motivational speaker, especially at fundraising events supporting Riley Hospital for Children at Indiana University Health, where she received treatment, and the Crohn’s & Colitis Foundation of America. She was named a 2013-14 Riley Champion by the Riley Children’s Foundation. A big believer in equal opportunities for children and teens with chronic illnesses, Sneha is working with Riley Children’s Foundation to design a leadership development conference to benefit those youth. Follow her @ on Instagram and Twitter: @snehadave98.
Why I Became an Advocate for People With Chronic Disease
Here’s why you should become an advocate, too.
Elderly woman holding hand.
Share your experience to lend a helping hand.
By Sneha Dave Feb. 24, 2016, at 9:43 a.m. + More
Dreamers are given the gift to believe, and for me believing became life-changing.
I came home from the hospital after losing my entire large intestine in a hard fight with ulcerative colitis. The next day, I gave up, because I felt that I had lost. One week later, though, I received a transformational gift. I am not sure where that gift came from, but it was a fighting spirit.
I have always had an incredibly supportive family, but I had no one who could truly relate to what I was going through, and I felt alone in battling ulcerative colitis. Not wanting others with chronic health conditions to feel alone in their fight, I decided to get into advocacy. I also became an advocate because my best friend died of osteosarcoma – a cancer that starts in the bones – and the chronic inflammatory bowel condition Crohn’s disease, and because I lost my childhood to ulcerative colitis. I started a nonprofit organization, the Crohn’s and Colitis Teen Times, became an inspirational speaker and began volunteering to support individuals with chronic conditions.
Sneha Dave speaks about her medical journey with ulcerative colitis at Purdue University in West Lafayette, Indiana.
Becoming an advocate can be as easy as opening up about your illness and sharing your story to educate others with the same condition. Here are some reasons why you should be an advocate:
Being an advocate is simple. The best way to advocate is to not be shy about your medical struggles. I used to have numerous accidents and frequently have to use the restroom, both of which are extremely difficult to talk about, especially with teenagers. In middle school, my peers did not know I had ulcerative colitis, or that in eighth grade I had a peripherally inserted central catheter, or PICC, line under my jacket. In ninth grade, I began telling people about my illness and it became easier for me to attend school, because people understood. While the sympathy I received got repetitive, increasing awareness about a disease was, in itself, very gratifying.
You will gain a great support system. When I recovered from a flare-up of ulcerative colitis, I became involved with my local chapter of the Crohn’s and Colitis Foundation of America. I met a number of people whose medical journeys were similar to mine. I was able to relate to so many people, and I was able to find out about an amazing camp for kids and teenagers with inflammatory bowel diseases called Camp Oasis. When I publicly share my story, even audience members who do not have IBD become a part of my fight. Educating people has been amazing, because I feel understood, and I hope that’s created greater empathy for people with these diseases.
You will heal emotional wounds you thought you didn’t have. I have always taken my disease in stride and generally tried to remain positive. However, coming out of my first major surgery, I felt lost returning to school full-time and adjusting to mainstream society. I was emotionally wounded. Meeting people with similar stories was inspiring because I saw their accomplishments and success in spite of the road blocks created by this illness. I realized that there was a life beyond recovery and treatment.
It’s public service. Advocacy serves your own community well through education as you share information on the barriers and opportunities created by your illness. You will feed off the inspiration you give to others. I truly enjoy speaking on behalf of Riley Hospital for Children at IU Health in Indianapolis at Children’s Miracle Network Hospitals’ dance marathons to raise money for the hospital that saved my life. Whether you believe in volunteerism or not, it’s truly amazing the impact your experiences can have on others.
It will change your attitude. I have always equated optimism to perspective. As I met more people while attending numerous events, I became aware of how much worse other people have had it. My best friend, who I met at an education conference, and who passed away, constantly inspired me to have an optimistic view on my own disease. Meeting these people and forming friendships became a reason for me to fight harder with my ulcerative colitis. Instead of giving up because of my disease, advocacy became a way for me to be inspired to live life fully.
You’re on your way to helping find a cure for your disease and others. When people hear your story they feel inspired to contribute to finding cures. When you share your journey with your disease, it inspires others to raise funds for good causes. I speak at many Children’s Miracle Network dance marathons to raise money for my children’s hospital, Riley Hospital.
So How Can You Become an Advocate?
Start by contacting your local organization that advocates for your illness, and share your interest in volunteering. If you do not have one, create your own group! Engage the one or two people you may know with your same condition or health challenge.
Social media is a great way to follow people going through similar struggles, and to collect and give tips without leaving your home. It can be extremely difficult to find people in your area, as I struggled with that because many people are not completely open about their illness. Furthermore, if you find someone who is insensitive or uneducated about your medical circumstances, speak up. This may, in some instances, even include sharing your perspective with medical professionals.
Come up with a unique idea that will garner attention and in return help people. I created the Crohn’s and Colitis Teen Times, which is a nonprofit organization that provides support to not only individuals battling inflammatory bowel diseases, but all chronic illness sufferers. This is one way you can create that fundamental support system needed for almost every chronic illness. There are so many platforms for advocacy through social media, YouTube or simply educating others about your illness.
It’s my desire to see more people talk about their illness to raise awareness and create more empathy for other individuals with similar conditions. While I longed to be a “normal” teenager, I realize that my struggles led me to this great gift of advocacy.
You are never too old or young to raise your voice for not only yourself, but for many others who are in genuine need of support. Don’t forget that advocacy is a big word with small origins.
Climate Justice Through Clean Cooking: A Teen’s Perspective
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By: Sneha Dave December 07, 2015 Alliance News
Kenyan woman and child
Empathy is the most powerful weapon, and it creates the most forceful change.
When I first went to the “Women In Peace” panel in Washington, D.C. as a prospective Georgetown student, I did not know about some of the most pressing and remarkably unknown problems that women and girls are facing right know. It was not until I heard the CEO of the Global Alliance for Clean Cookstoves, Radha Muthiah, speak about the vulnerability of girls and women, that I realized how unsafe cooking methods are putting girls and women’s health and safety at risk.
At age six, I was diagnosed with Ulcerative Colitis, a chronic and severe illness, which has no cure and no known cause, I have lost my entire large intestine and most of my childhood to this disease. Today, I am a seventeen-year-old who suffers from chronic illness, and I know how important it is to prevent them in any way possible. I have recently learned more about the widespread health challenges that young people around the world are dealing with, and I want to do my part so other people can learn about them as well.
There are so many challenges we have sought to overcome, but some of the largest underlying challenges to sustainable development and human well-being remain. One pressing example is inefficient cooking. Around three billion people rely on cooking over open fires and traditional cook stoves with highly inefficient fuels – that’s almost half the people on the planet. As a result, more than four million people die each year due to exposure to smoke from inefficient cooking. These unsafe cooking methods cause cancer, pneumonia, heart and lung disease, blindness, and burns on an unimaginably large scale. Still, this massive problem is relatively unknown, particularly to the people it is hurting the most.
I have empathy because I drive my own car to school every day, and I come home to a smokeless house stocked with food that provides an amiable learning environment. But millions of my counterparts in Africa, for example, spend up to five hours each day collecting fuel. Fellow girls that are refugees often leave their camps to collect fuel, putting them at greater risk of physical and sexual attacks, dehydration, and physical injuries. Reducing girls’ daily work load can make an incredible impact on their education and their empowerment. Instead of collecting fuel and spending time cooking for the family, they can spend time learning skills that can genuinely transform their lives.
Poor cooking methods also lead to chronic illnesses and impair well-being. Women and girls inhale smoke from cooking that directly results in deteriorating health conditions such as lung cancer, as well as a wide range of other chronic illnesses. This is especially important to me, because chronic illnesses are permanent, and it is saddening to realize that many girls are at risk of their health being sacrificed for the rest of their life. One hundred ninety five thousand burns are reported each year due to cooking. These problems could be addressed by enabling households to cook with clean and efficient cookstoves and fuels. I want to emphasize that this is all preventable. All the diseases and four million three hundred thousand painful deaths are preventable.
It’s a problem. It’s an indescribably huge problem. Looking at South Asia alone, one can notice that polluting cooking practices causes half of total black carbon emissions. According to the U.S. Environmental Protection Agency, black carbon is dangerous because it absorbs a million times more energy than carbon dioxide. Up to twenty-five percent of black carbon emissions are caused by inefficient cooking. Imagine a girl walking home on a dirt road, after hours of gathering fuel, to a small straw hut with bundles of wood on her head. Imagine this girl and her mother preparing a traditional tortilla-like staple of India, roti, on a primitive stove. While they are cooking their family’s food, they are also being exposed to toxic smoke that is bad for their health and global air pollution levels. It does not have to be this way for millions of girls around the world.
“Inefficient cooking … alters the lives of innocent families and negatively changes bright futures of girls and their families. – Sneha Dave
There are remarkable efforts underway to address this massive, but solvable, challenge. The Global Alliance for Clean Cookstoves continues its efforts to create a thriving market for clean and efficient cookstoves and fuels, which enable households to access and use live-saving and life-transforming solutions. The Alliance is utilizing its proven market-based approach to reach as many people as possible and ensure that progress is sustainable.
Recently in Accra, Ghana, the Alliance hosted the Clean Cooking Forum to share best practices and business models and forge new partnerships. From around the world, 500 people from 50 countries came together to strengthen the clean cooking sector so that it can reach its goals. While I did not attend in person, I followed the conference on social media and was inspired by the participation of global leaders, as well as outspoken girls from Ghana, who are dedicated to taking this issue on and making lasting change.
COP21, the twenty-first United Nations conference on climate change, has begun in Paris and will hopefully present new opportunities to prioritize clean cooking within climate change mitigation efforts. Addressing climate change is not just about rich countries cutting their emissions, it is also about low and middle income countries addressing the growing climate risks for their people and investing in sustainable paths forward. Clean cooking solutions present opportunities to make climate and health impacts at both the macro- and
Sneha Dave in Washington D.C.
How does all the issue of inefficient cooking affect us? It makes our environment less healthy. But most importantly, it alters the lives of innocent families and negatively changes bright futures of girls and their families. With empathy and the lessons we have learned from research and practice, we can address the challenge of inefficient cooking. Underprivileged people should not suffer from debilitating chronic health conditions and the impacts of climate change when the preventive tools are right in front of us.
Sneha Dave is a senior at Center Grove High School in Greenwood, Indiana, who is dedicating to improving health and well-being, particularly for young people dealing with chronic illnesses. At age 6, she was diagnosed with ulcerative colitis, which she has successfully battled with the help of several major surgeries. She founded “The Crohn’s and Colitis Teen Times,” a newsletter designed to support teens with inflammatory bowel disease. In addition, she is a motivational speaker, especially at fundraising events supporting Riley Hospital for Children at Indiana University Health, where she received treatment, and the Crohn’s & Colitis Foundation of America. Her advocacy efforts have been broadcast on both television and radio, and she was named a 2013-14 Riley Champion by the Riley Children’s Foundation. A big believer in equal opportunities for children and teens with chronic illnesses, she is working with Riley Children’s Foundation to design a leadership development conference to benefit those youth.
One teen’s advice on staying resilient.
By Sneha Dave Sept. 28, 2015 | 8:53 a.m. EDT
There are really no words to describe how it felt to step outside the house and think that everything I’d gone through for the past few years had potentially ended. Although it was the end of many grueling years, it was the start of a new journey, and the start of new societal learning experiences.
It wasn’t until my ulcerative colitis become aggressive that I became isolated from the society I grew up in. Even though I was diagnosed at age 6, my illness began to give me serious medical setbacks at the beginning of sixth grade. From sixth grade until about the middle of ninth grade, I lived a life that many would call completely isolated. Ulcerative colitis is a disease with devastatingly embarrassing symptoms, like frequent restroom usage and accidents. In my case, I became so weak that I needed assistance even to walk, especially stairs. A homebound and secluded life became a weight that brought my once talkative and bubbly personality to a halt for years. Although it has been two years since I transitioned to a new lifestyle, there are some things I’ve learned and continue to learn about how to get back to mainstream society after being chronically ill:
1. Interact with as many people as possible.
Although this may be obvious, it’s much easier to say than it is to actually do it. I remember it took everything in me to start a conversation with friends and family with whom I had lost touch. The more I talked to people, though, the easier it became. Often, people won’t understand your story – and that’s OK, but the more attempts you make to converse with people, the more you come out of the shell.
2. Know that it will take some time. Be patient.
For some people, adjusting to society comes naturally. Butt for some individuals who are chronically ill, coming out of a societal isolation can be a challenge. For instance, there were moments when I returned to school full-time as a sophomore when the school environment felt overwhelming and caused me to be reserved. With patient effort, I was able to successfully integrate back into my social group.
3. Adjusting comes with stages.
There was a stage when I came home from school and was just angry because I couldn’t handle school and the new workload I was expected to do. I was impatient, I struggled to cope with such drastic lifestyle changes and on top of that, the frustration of having a new ileostomy bag made my life harder to deal with. While there are worse scenarios than this, it’s important to recognize that adjusting will not come in a week, a month or even a year. Looking back, there were several stages I went through before I recognized that I was becoming more comfortable with this “new” life.
4. Even though people around you can’t see a transition, know it’s a huge thing to have to go through.
People will never know the extent of your illness and how much it has impacted you physically and emotionally. Whatever disease it may be, coming back to the life you once called normal can prove to be more difficult than it seems as you step out of your illness. I learned this from the “shock” factor I experienced upon my return to school full-time during my sophomore year of high school.
5. Get involved with an organization you can relate to.
As soon as I got better, I immediately found ways to help out, and because I found there was not enough support for teens battling Crohn’s and colitis, I founded the Crohn’s and Colitis Teen Times – a nonprofit organization that helps teens with these two chronic conditions. This opened up opportunities to meet other people with Crohn’s and Colitis. Furthermore, one of the easiest ways to get involved was with the local chapter of the Crohn’s and Colitis Foundation of America. It was emotionally healing to help others, but it also gave me an opportunity to go to events I actually felt comfortable going to, and where I felt people understood my situation – or at least made an attempt to understand.
6. Don’t wait for opportunities, because they can be life-changing.
A life-changing experience for me was when I was nominated to be a Riley Champion for Riley Hospital for Children. This honor may seem exciting to some, but for me it was also a defining moment. It helped me break the shell of silence I had for years, and it gave me a way to tell my story to others and relate to society.
7. Never, ever give up.
It’s the small things that will be difficult to overcome, such as denial of opportunities for being sick or simply undesired results in spite of working hard while being sick. Everything that I’ve achieved so far, I’ve had to work twice as hard for. Generally, people have told me to take it easy, especially as I am still healing from surgeries and having procedures. I want to perform at levels that others are able to despite my situation. Never be disappointed if you are denied or don’t get an expected result – it’s happened to me and numerous others. The most admirable and successful people are those who have worked in spite of setbacks.
8. You can be physically strong. Give it a try.
In spite of all the battles you go through fighting your disease physically, it’s worth trying to physically challenge yourself as much as your condition allows. I found that trying to get back in the game of tennis was a confidence booster. Though conditioning exercises often left me exhausted, they made me feel stronger and like I was getting back to a normal life again.
While most people may not think of adjusting to mainstream society as an actual problem, it certainly is – many people struggle to return to this “foreign” lifestyle. It is as imperative to be resilient in adjusting as it is to fighting a medical battle, because often this is harder than the physical pain of the illness. The most important aspect to keep in mind is that with time, your life will be put back together like a complete puzzle.
A Camp for Kids With Crohn’s and Colitis
By Sneha Dave Aug. 6, 2015 | 10:18 a.m. EDT + More
As I reflect back on an amazing week at Camp Oasis – a camp for kids with Crohn’s disease and ulcerative colitis – I find the four years I have been able to attend this camp have had a lasting impact on me.
Established by the Crohn’s & Colitis Foundation of America, the camp has shown me that there are other people, especially teens, suffering with the same problems I face. Having the opportunity to relate to them allowed me to gain a whole new perspective on my disease.
Diagnosed at age 6 with colitis, a chronic inflammatory bowel disease, my mom sheltered me from society, fearing that people wouldn’t be able to understand the disease. Like many other diseases, colitis is complex, and it causes embarrassing issues, including frequently needing to use the restroom. So it’s difficult to talk about, especially with kids and teens. But as I soon learned there were other kids facing the same challenges, I felt more comfortable communicating with people about this disease.
Sneha Dave attended Camp Oasis, for kids with Crohn’s disease and ulcerative colitis, at YMCA Camp Copneconic in Fenton, Michigan.
When I first heard about Camp Oasis, I couldn’t imagine going to a camp for a week, away from my family, with all my medical struggles. But as I approached sixth grade, I felt it was time to break out.
My family and I began to attend education conferences, where I was fortunate to make an amazing friend. He encouraged me to attend Camp Oasis, convincing me that I would have a great time. Unfortunately, the first year I attended with him was the last year I would be going with him, as he passed away from osteosarcoma, a bone cancer.
The first year of camp, I went as an underweight middle schooler who looked extremely young. My cheeks were puffed up by steroids I was prescribed to lessen the extreme inflammation I had at the time, and I used the restroom incessantly and had resulting accidents. I was on so many medications, yet I still attended. I went for the support I subconsciously knew I needed.
Although there were certainly other kids who were sick, the flare-up of my disease made me want to rest frequently in the camp medical center. Meanwhile, the staff made every attempt to rid me of thoughts relating to my sickness, and did so successfully. I was still able to participate in almost every activity and make amazing friendships. Despite how sick I was, that first year of camp allowed me to learn and grow beyond my disease.
Though I wasn’t able to go every year due to numerous health issues and surgeries, I looked forward to intermittently attending Camp Oasis. It was the best week of my year.
It felt amazing to be understood, and I realized I didn’t have to fight colitis alone. The feeling that you get when you are able to relate to others in your position just consumes every part of you and truly makes dealing with the disease a whole lot easier.
Through Camp Oasis, I have gained much more than lifelong support from amazing people.
Previously, I was able to do simple tasks after returning from major flare-ups, when the disease became really active and inflammation levels were extremely high. But I still was not as independent as I wanted to be. This camp proved to me that I could take care of myself. It gave me a sense of confidence that I could live on my own and be independent with this disease.
It was the positivity and the “forget about your disease” for a week kind of attitude that really made camp an unforgettable experience. There’s nothing cooler than looking up to your counselors, who have the same disease as you, and seeing how much they have achieved, despite having a medical condition that undeniably tested their strength.
This year was my final year as a camper, so I became a leader in training. In this role, I was able to help younger campers dealing with Crohn’s and colitis. Being able to see younger kids endure such devastating diseases is inspiring, and helped me put aside any negativity. Even though I can’t remember life without ulcerative colitis, there is something about the innocence of younger kids dealing with inflammatory bowel disease that can put your struggles into perspective.
Attending Camp Oasis has been a life-changing experience for me. I felt supported through some of the toughest times, and I know it’s had a positive impact on so many kids’ lives, including mine. It took away the feeling of loneliness I experienced while I was sick and gave me something to look forward to each year.
Such camps are important for all children with chronic illnesses to attend. I encourage any kid or teen with a chronic illness to explore going into a camp that could provide them with feelings of belonging, camaraderie and joy.
Sometimes it’s difficult to realize that you need support, but there is no doubt that knowing you aren’t the only one facing challenges associated with having a chronic condition makes any situation better.
How to Stay Positive When Life Includes a Serious Chronic Illness
By Sneha Dave July 17, 2015 | 11:02 a.m. EDT + More
I remember when I was carefree, and could step outside with a Cheshire-cat smile, worrying about nothing more than when snack time was. After being diagnosed with ulcerative colitis at age 6, I longed to reclaim that peaceful mindset free of worries, doubts and insecurities.
While it’s difficult to stay positive during a severe illness, it’s amazing how much you can overcome the negativity that infringes upon you in tough times. Here’s what has helped me get by:
Know That Better Moments Are to Come
There was a point when I’d wake up around 20 times a night to use the restroom. I could barely get any sleep. These nights were absolutely dreadful, as I would awake with spasms that would paralyze every part of my body. The pain was unimaginable, but I knew I had to get through it. I clung to the notion that things would get better. They had to. If I could just get through the current situation, I would have less pain. Keep on believing you can conquer the worst moments; better ones await.
Count Your Blessings
Ulcerative colitis has made me resilient; it’s given me the strength I’ll need to fight the other inevitable struggles that will arise in my life. I focus on the small things that I am so fortunate to be able to do now, such as taking simple walks around the neighborhood or going on hikes, since I could do so little just a couple of years ago, before undergoing surgery.
Work to Create Change
When I was experiencing a huge flare-up, I felt alone; I really had no one I could relate to with this illness. I knew this must be the same for the 80,000 other teens in America who are living with Crohn’s and colitis. That’s what inspired me to create change by starting a nonprofit, the Crown’s and Colitis Teen Times. I have become addicted to philanthropy; it brings me a sense of emotional healing. It is not necessary to start something big – maybe just a support group that meets monthly. The opportunities to create support are endless and could start with just joining the local chapter of the organization advocating on behalf of your disease; or if there isn’t one, work to raise awareness via other avenues.
Remember: The Situation Could Be Worse
While it may seem as if the emotional and physical pain curve couldn’t get any higher, people are enduring worse situations. Most likely there are people suffering with your illness in Third World countries without access to the treatments you receive. Not only this, but there are people who don’t know what’s in store for them. My best friend who passed away from bone cancer and Crohn’s disease was always positive. He went through worse ordeals than me, and when I was in pain or couldn’t bear the mental devastation, I thought about his resilience and that I am fortunate to be in my situation. I knew I had the resources to partially get back the life I once had. I am so grateful for the treatment opportunities I have been able to access.
Find Something That Makes You Happy
While this is obvious, it bears repeating: It’s so important to find something that keeps you busy and something you can rely on to make you happy. After coming home from my first surgery, I was certainly depressed. While this severe depression lasted only a short while, my mother convinced me to do something that would take my mind off the situation. For me it was philanthropy and giving back, but for many people it is art or music. Surround yourself with some or many activities that can be an escape from your illness.
Living with a chronic illnesses is definitely not easy, but realizing that changing my attitude could make my situation easier has been so helpful. These are struggles I will cherish as they made me who I am today. The mountains I climb today will lead to the peaks I’ll reach tomorrow.