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 HealthCentral.com , “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” .
About.com, 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.
