Thursday, August 8, 2013

Juvenile Rheumatoid Arthritis Advocacy (by Logan)


(Logan wrote this paper for his college English class and wanted to share it.)

           The average teenage boy is filled with energy and feels like he can take on the world. However, I am most certainly not your average teenage boy; every morning it takes me a good twenty minutes to get moving. My joints creak as I step out of bed. My body requires a “break in” period every day. My hands hurt so bad on occasion that I am incapable of doing the one thing I love, playing guitar. I live with a form of juvenile arthritis known as spondyloarthropathy, which mainly affects the tendons and ligaments. Many people however live with much more severe forms of rheumatoid arthritis that are potentially life threatening. By definition, juvenile rheumatoid arthritis, or JRA, is an autoimmune condition that can affect virtually any part of the body, including the skin, eyes, and vital organs. Because arthritis is perceived as an “old persons’” disease, many people disregard how dangerous it can be and who it effects. In actuality, arthritis can hit anyone, at any age; over 300,000 children suffer from various forms of juvenile arthritis in the United States, yet nobody knows about it (Advocating for Kids With Arthritis). Awareness needs to be raised for this overlooked diseased and advocates are desperately needed.

          The vast majority of people view arthritis as an old person’s disease that is solely related to joint pain. Because of what is assumed, people think that living with arthritis are easily treated and cured. Despite this assumption, there are actually over one hundred different forms of arthritis (AFPacificRegion). Many patients suffer from various symptoms. This is known as overlap syndrome. As a result of various symptoms, many children are on a series of different medications. Usually patients are on medications to counteract side effects caused by other medications. For instance, many children must take Zofran with their Methotrexate injections, in order to prevent extreme nausea.  For children with oligoarticular arthritis, which affects four or less joints (Dunkin, Mary Anne), doctors may prescribe corticosteroid injections, which are applied to the joints. Polyarticular arthritis on the other hand, pertains to five or more affected joints. Because of the numerous joints affected, steroid injections may be difficult, so many children are prescribed with methotrexate, a chemotherapy used as an anti rheumatic drug (Dunkin, Mary Anne). Though methotrexate is used for polyarticular arthritis, it is commonly used among the various forms of JRA. Patients with JRA who haven’t experienced success with methotrexate are usually prescribed biologics, such as Enbrel and Remicade, which are created biologically as opposed to chemically and act as a buffer to the patient’s compromised immune system. These drugs are generally administered through either IV-infusions, which push the medications into your bloodstream at a slow pace, or injections. Systemic onset JRA is a completely different beast; this form of JRA is associated with both systemic and joint diseases, making treatment more complicated. Because of the double-edged sword that is systemic JRA, treatment may involve a cocktail of narcotics, anti inflammatories. biologics and steroids. Though this has only scraped the surface of JRA treatment, nearly all treatments of juvenile rheumatoid arthritis take on the same goal, to achieve remission, something that can only be reached with patience and at times, proper funding.

          Over 300,000 children are diagnosed with some form of juvenile rheumatoid arthritis in the United States alone (Advocating for Kids With Arthritis). All of these children face adversity daily, and are forced to go to great lengths in order to get the treatment that they deserve. Caitlin Ryan, age fifteen, was diagnosed with JRA at the age of three. She doesn’t “remember life without pain” and has to find alternative ways in order to accomplish average tasks. By the age of twelve, Caitlin had both of her hips replaced due to this disease and is still fighting (Caitlin Ryan). Danielle Guth has had JRA since she was four years old and is now going into her senior year of high school. Doctors, medications, and pain have become a norm in her life, making it hard for her to participate in her school’s sports. Due to her arthritis, Danielle has gone through extraneous pain, surgeries and has suffered from alopecia, an autoimmune condition that causes one’s hair to fall out (Danielle Guth). For Kristen McAllister, her JRA journey began at eight years old. At first it was thought that her pain was due to her gymnastics, but when she had the swollen joints examined, doctors discovered that they were rheumatoid nodules. Kristen says that juvenile rheumatoid arthritis has been “destroying my joints, muscles, vital organs, and eyes.” Shortly after her diagnosis of JRA, she also discovered that the arthritis has been affecting her eyes in the form of inflammation known as uveitis. In conjunction with JRA, uveitis is a painless swelling of the eyes that can only be diagnosed when the eyes are examined under a microscope. If not treated promptly and properly, uveitis has the potential to take its victim’s vision, either partially or completely. As a result, she was put on two weekly injections of Humira and methotrexate yet she didn’t respond, so she is now on a monthly IV-infusion of Remicade, solumedrol, and IVIG (Kristen McAllister).

          Despite the idea of finding a cure for this autoimmune disease being unlikely within our lifetime, there are ways that we can make these kids’ lives more bearable. Through advocacy and raising awareness, we can spread the word about how dangerous, and unbearable juvenile arthritis is. As previously stated, 300,000 children in the United States have been diagnosed with some form of juvenile arthritis (AFPacificRegion). Even though these children make up a vast majority of children with diseases in America, there are less than 250 pediatric rheumatologists nation-wide; 


to add to that miniscule number, 90% of these pediatric rheumatologists are clustered in major cities (Advocating for Kids With Arthritis), making it nearly impossible for many families to find a doctor that they like within a few hundred miles. Every major city has at least one Arthritis walk a year, but this isn’t enough; we need to openly talk about it with others for them to understand, and show them how it affects these children daily. Without starting a conversation about it, juvenile arthritis will never gain the same awareness that pediatric cancer, or juvenile diabetes gets. In the pediatric infusion room at some hospitals, cancer patients often receive "rewards", care packages, and/or gifts from donors. These donations are specifically labeled for the cancer patients, even though the patients with JRA are in the same room as them, and most likely receiving similar treatments. To add to that, every time a cancer patient is cured in many pediatric infusions rooms, a bell goes off. The bell signifies final day in infusion room.  There is a cure for many childhood cancers, due to their funding, but there is no cure for JRA. These children who have JRA may never get to hear that bell ringing for them, but they get to sit and watch countless cancer patients be cured throughout their lifetime. People don’t understand the disease, or don’t even know about it, but it is our job to spread the word. Just like Kristen said, “By advocating and spreading awareness, you are doing your part in turning that misunderstanding and ignorance into understanding and support” (Kristen McAllister).

          On a national level, juvenile rheumatoid arthritis has gained little to no attention amongst the people. Here in Florida, there is even less awareness. My brother and I will walk around pushing an empty wheelchair, getting strange looks form people; when they ask why we are pushing the chair, we say that we have arthritis and that we are feeling good enough to walk. After hearing that, many will walk away with a look of doubt that we have arthritis.  Sometimes teenagers will make fun of us, by calling us cripples, mocking the way we walk, laughing at us when we are in wheelchairs, and even by doubting our physical abilities. On top of that, people who are elderly will try to relate because they think they know the pain that we go though. What these people refuse to comprehend is that there are over one hundred forms of arthritis; and we are not equivalent to the elderly. The only people who truly understand what my brother and I have are our friends, because they care enough to learn and understand. Me and my brother don’t even have the same forms of arthritis.  I have spondyloarthropathy, which is essentially a permanent form of tendonitis; while my brother has systemic onset juvenile rheumatoid arthritis, meaning that his entire body is affected, including his vital organs. Because of our various diagnoses, we are able to better educate people who care enough to ask what we have. This year, our walk team was the highest fundraising team in not only the state, but also the entire region, raising a total of $16,622 (Parker’s Purple Playas). Not only does this give perspective on where juvenile arthritis stands with the nation, but also in the state of Florida, where many elderly couples who are arthritic live in the suburbs. Not only is JRA overlooked in Florida, but so is the typical form of arthritis that impacts the elderly, which is called osteoarthritis.

          Juvenile rheumatoid arthritis is hands down, the most overlooked childhood disease in America. In addition, when not promptly and properly treated, it can be an extremely dangerous disease. It’s an invisible disease, meaning that you can’t tell if someone has it, unlike the "bald head" associated with cancer.  There is not the level of awareness to back JRA like juvenile diabetes. However, with advocacy comes better funding for medical fellowships, more doctors, medical research and advancements, and most importantly, a chance of remission. Advocating is as simple as showing a video to a friend, or telling them how arthritis affects children. But without voices, the message won’t be heard, and a lack of progress is just as bad as digressing. It just takes one conversation to gain someone’s support.
Works Cited

1. “Advocating for Kids With Arthritis.” Kidsgetarthritistoo.org. Arthritis Foundation. 23 July 2013. <http://www.kidsgetarthritistoo.org/who-we-are/advocating-for-kids.php>.

2. AFPacificRegion. “Faces of Arthritis.” YouTube.com. Arthritis foundation. 29 Oct 2012. 23 July 2013. <http://www.youtube.com/watch?v=8zd3xXabGZ8>

3. Dunkin, Mary Anne. “Understanding How Doctors Treat JIA.” Kidsgetarthritistoo.org. Arthritis Foundation. 23 July 2013. <http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/jia-treatment-guidelines.php>.

4. Guth, Danielle. “JA Awareness.” Personal story emailed. 24 July 2013. 24 July 2013.

5. McAllister, Kristen. “Juvenile Arthritis.” Personal story emailed. 24 July 2013. 24 July 2013.

6. “Parker’s Purple Playas.” Arthritis Walk. Arthritis Foundation. 5 Aug 2013. <http://sacarthritiswalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1042465&team=5311275>.

7. Ryan, Caitlin. “My Personal Story.” Personal story emailed. 24 July 2013. 24 July 2013.

 

2 comments:

  1. excellent paper. very well written Logan....I pray that advocacy makes an impact on research on all forms of arthritis especially in young people. It is hard for people to understand what you all go through on a daily basis, i know i could not comprehend your reality but keep your faith and trust that people care more than you know. The pain in this world is a bridge for those who endure to rise above and be stronger than we ever thought we could be. I admire your whole family for this!! I love you. Perhaps this paper could be published somewhere??? Its good!

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  2. Very informative post about arthritis. Our stem cell arthritis treatment can improve the condition of arthritis.

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