Monday, July 23, 2012

The Misconceptions of Juvenile Arthritis- as written for my Comp class

The Misconceptions of Juvenile Arthritis
Approximately 300,000 children are affected with  forms of autoimmune arthritis that are clumped under one umbrella term, juvenile arthritis.  These different diseases cause pain, stiffness, rashes, fever, and inflammation of the joints and internal organs.  Some forms also destroy muscle tissue.  They can be deadly without proper treatment.  These diseases do not get very much awareness, despite having more children affected than children stricken with muscular dystrophy, sickle cell anemia, and cystic fibrosis combined. (Dr. Manny Alvarez)   One form, Dermatomyositis, is covered under the arthritis umbrella and is a form of muscular dystrophy.  Many believe it is because of the word “Arthritis” in their label that these diseases do not tend to be taken seriously by the public.  There are many misconceptions associated with these debilitating diseases, as well as a negative stigma surrounding those affected and their families.  Even children feel the stigma.  Careful examination of the facts will show that many of these misconceptions are inaccurate.  My goal is to raise awareness for these horrific diseases while dispelling some of the myths.  
A recent research study  written by A. Tong called “Children’s experiences of living with juvenile idiopathic arthritis” that was based on records of 542 children proves that many of the children feel misunderstood,  stigmatized, out of control of their bodies, and they are in overwhelming pain much of the time.  As the parent of two children with arthritis, I agree with this research.  What this research does not tell you is how misunderstood the diseases themselves are.
Why is there a negative stigma?  One problem is that people do not believe that children get arthritis. When people hear the word arthritis, many tend to think about their grandparents who may have severe osteoarthritis.  A larger problem is that many commercials for over-the-counter products ranging from oral pain relievers like Tylenol Arthritis to topical creams and lotions tout that these products work for arthritis.  The truth is that they really only work for specific types of arthritis.  Most of these commercials, as well as commercials for prescription medicines like Enbrel, show older people walking along, smiling, and doing every day, normal things.  These advertisements do not accurately portray most of these diseases that are autoimmune, nor do they show children in them.  If people don’t see proof in advertising, how would they know that kids get arthritis, too?  To quote Tiffany Westrich, founder of  the International Autoimmune Arthritis Movement from an article on , “So what is contributing to this gross misunderstanding?  Look around you.  It's everywhere.  It's on our televisions, it's in our print materials and it's on our computer screens.  The best way to stop it is to change what is publicized in the media.”   People will never understand that there are different forms of arthritis that are autoimmune, or that they can affect children until advertising changes are made.
Osteoarthritis is what the older people generally have.  According to Tiffany Westrich, “The truth is Rheumatoid Arthritis  is a systemic disease that affects joints, connective and soft tissues, muscles and sometime organs, while Osteoarthritis only affects the weight bearing joints.”  While they have not isolated an exact cause, researchers do know that Rheumatoid Arthritis, Lupus, Scleroderma,  Mixed Connective Tissue Disease (an overlap syndrome, similar to Lupus), Psoriatic Arthritis, and Dermatomyositis are all autoimmune in nature.  All of these can affect children, but the medical community clumps children under the diagnosis of “Juvenile Arthritis”.   It is possible for some children to have several different types overlapping, such is the case with my daughter.  Yet, when people hear that you have a child with arthritis, the reaction is generally disbelief.
Despite the belief that people with arthritis have poor diets, while some people with forms of arthritis have food sensitivities that can cause reactions severe enough to mimic arthritis, most people do not benefit from changes in diet.  There have been numerous studies based around diet and rheumatoid arthritis, but there is no proven link.  According to the Arthritis Foundation and Dr. Yukiko Kimura in a Fox News report called “Arthritis in Children”, a healthy diet is necessary to keep the child healthy, but there is no diet that will significantly help or “cure” arthritis.  Staying away from inflammatory foods will help a bit, but it is far from a cure.  The most important diet related item for these children would be additional vitamin D as most people in this category are vitamin D deficient.  Children on steroids for long periods of time benefit greatly from a calcium supplement because steroids can cause osteopenia, brittle bones. Of course, weight should be controlled to help the weight bearing joints to not have to work so hard.    
People tend to not believe that affected children are sick because many of them still act the same.  Eventually children get used to daily pain to a degree, and with the medicines that are available now, many people can function at an almost-normal range.  That does not mean that they are cured, or even that they are feeling well; it simply means that they have learned to adapt.  They try to keep up with their peers, and be more like the other children. 
Some  also believe that the children are exaggerating their pain to get out of doing activities.  This is a common misconception before diagnosis, also.  On the contrary, many of these children struggle to be like their peers, and will push past their limits to do so.   No one can “see” arthritis at work.  Aside from joint or muscle pain and potentially affected organs, other possible symptoms include: chronic fatigue, chronic pain, stiffness, disfigurement, disability, joint deterioration, blindness, hearing problems, and problems with speaking when the joints in the throat are affected. 
             People have a difficult time understanding how the affected children may feel well one day, terrible the next, and fine again on the third day.  Chronic conditions come and go. A child may have a sore knee for days, then the pain is suddenly gone, only to be replaced with a sore hip or elbow.  With the medicines being used today, some children do go into remission.  Many will not achieve remission for several years if ever, but their symptoms can be controlled fairly well.  This does not mean that they live pain-free. 
Regardless of whatever myths or misconceptions that people may believe, a special diet will not cure arthritis, it is very real, very painful, and can be life threatening.  These diseases are nothing to take lightly!

Works Cited
 Alvarez, Dr. Manny. “Arthritis in Children”, Fox News, N.p. Web, June 23, 2012
Dr. Alvarez is a doctor for Fox News that reports on medical conditions.  In the article, he interviewed a leading Pediatric Rheumatologist, Dr. Yukiko Kimura, of Hackensack University Medical Center, to learn more about Juvenile Arthritis and the conditions that the umbrella term covers.  They discuss prevalence, diet, and symptoms of the disease.
Eustice, Carol. “Parts 1 and 2 of 2- Inaccurate Portrayals of Arthritis Lead to Misunderstandings” ., September 15, 2008, n.d. Web.
This article is very relevant to my work.  It details the misconceptions about rheumatoid arthritis disease, and gives specific examples of what people seem to think when dealing with a person with arthritis.  She points out that some people try too hard to help an affected person, which does not help at all but can, in fact, cause depression and a feeling of uselessness.  She also discusses the myth that so many people believe arthritis can be cured with diet.  She informs the reader of  what rheumatoid arthritis is and isn’t, and she explains that there is no cure.  This paper is written by a nurse that suffers from rheumatoid arthritis.       
Tong, A., et al.  “Children’s experiences of living with juvenile idiopathic arthritis: Thematic synthesis of qualitative studies”, Arthritis Care Res.  Hoboken, April 13, 2012. Web.  
This was a peer-reviewed medical article on PubMed, added by the American College of Rheumatology discussing how juvenile arthritis affects children.  The researchers used clinical data from electronic databases and other relevant clinical articles.  This research found that affected children feel stigmatized, unable to keep up with their peers, they feel a lack of control over their bodies, and many are depressed.  This source will help me to portray how the affected children feel.   “They have a sense of being misunderstood and stigmatised, and feel perpetually caught between having hope and control over their bodies, and overwhelming pain and despair.”  This was said on page 1 of 1.

 Walker, Gayle-Cillo and Marylou Killian.  “Myths and misconceptions about rheumatoid arthritis”, N.p., July 2010, Vol. 5 no. 7.  Web.  
            This article on American Nurse Today also helps to dispel some of the myths associated with autoimmune arthritis.  This article delves a bit deeper into the treatments and medications,  how these diseases are diagnosed,  and some of the other side effects that people don’t always know about. In paragraph two, the nurses wrote, “The variable onset of RA, subjectivity of symptoms, elusive manifestations, and occurrence in relatively healthy young females can frustrate both patients and healthcare pro­viders trying to make a definitive diagnosis.”  This also shows that many in the medical community have a difficult time diagnosing these diseases.  This will be important when building my case.
Westrich, Tiffany. “Misunderstanding RA- how Much is the Media to Blame?”.  Health Guide on
This article is important to my research because it compares osteoarthritis with rheumatoid arthritis.  Most people do not realize that there is a difference, but in reality these are very different diseases; osteoarthritis is not an autoimmune disorder, for one.  This article also discusses how the media plays a huge part in misrepresenting rheumatoid arthritis as being similar to osteoarthritis.  On page one, Ms. Westrich says, “So what is contributing to this gross misunderstanding?  Look around you.  It's everywhere.  It's on our televisions, it's in our print materials and it's on our computer screens.  The best way to stop it is to change what is publicized in the media.” She also discusses specific advertising methods that over-the-counter drug companies use to mislead the general public into believing that mild products such as Tylenol can stop the pain of their rheumatoid arthritis, and not only for osteoarthritis.  She points out that while many children are affected, the drug companies don’t show children on their commercials, or even younger adults.  She also talks a little bit about the true first line of treatment for each disease.   Ms. Westrich is the founder of the non-profit organization International Autoimmune Arthritis Movement.  She has coordinated with many different rheumatology doctors and other professionals. 


  1. Dee,
    This is excellent. There are many things this reminds me of from my childhood and dealing with both other kids and adults who didn't believe me. I finally got to a point in my teen years where if an adult openly said how it wasn't possible I could have arthritis that my response was usually a sarcastic "Well let's go back in time and tell my 7 yr old body and the drs who diagnosed me that and see what happens." I was nicer to people who weren't rude about it and their attitude was more shock and then concern than disbelief. I've blocked out a lot of the treatment I got from other kids. But the quote below is one that I identify with very much that I have never blocked out.

    "People have a difficult time understanding how the affected children may feel well one day, terrible the next, and fine again on the third day."

    I well remember how many kids felt I was faking it because of this. At times my pain would change within a few hours even and so say in the morning my right knee would be hurting and by afternoon it'd be my left hip because I'd end up putting more weight on it to compensate for my right knee.

    Another thing I remember was how the other kids thought I was "so lucky" because I got to leave class early to get to my next class on time or because I didn't get counted tardy if I was not able to leave early and was late to my next class. Or because I had an elevator key. Or because I had 2 sets of books, didn't take gym class and got to work in the library or the guidance office, or because I left school early a lot because of a dr appt. In middle school my pediatric rheumy put up a HUGE fight to get PT in school for me. When I got to leave a class to have PT in an empty classroom other kids thought I was lucky. They didn't realize how painful that PT was for me and how I hated being singled out a lot for all of those various reasons. I remember someone tripping me one day because they thought it was funny to watch me try to get up and pick up all of my books and stuff. And not a single person would help me. That was middle school. High school it was mostly the "You're lucky" comments I mentioned earlier.

    The only major problem I had in high school with a kid doing something to hurt me was unrelated to my JRA and just based on the fact the guy was a major bully. We had the same last name and his locker was next to mine. We had a regular narrow tall locker and then a boxy area that was as wide as two lockers on top. There were 2 of these stacked on top of the two lockers below. The person with the left locker had the lower one of the two upper locker areas Unfortunately his locker was on the left of mine and so he had the lower locker of the the upper lockers and I was too short to reach the upper part of my locker. The really bad part was that his upper locker door opened toward my side of the lockers and was at just the right height that every time he opened his upper locker, he'd do it so that it hit me in the head. I complained to the principal's office but of course he played innocent when asked about it. So I finally just stopped going to my locker when he was at his. This meant I was using my tardy excuse more. Eventually we were able to switch lockers more easily and so mine was only next to his for a year or so. Thankfully in high school most kids were over the rudeness about my JRA.

    Even now, at 35 I still have people who would like to think I don't know what I am talking about when my diagnosis comes up, but it's a bit hard to ignore the toll JRA has taken on me. I walk with forearm crutches and wear leg braces. Or use a wheelchair at times. So pretty hard to ignore!

    Great post though!