What do YOU think of when you hear the word “ARTHRITIS”?
When
I was younger, if I didn’t know the meaning of a word, my mom would say
“look it up”…well, I decided to look up “arthritis” for the fun of it…
Merriam-Webster dictionary defines arthritis as: “inflammation of joints due to infectious, metabolic, or constitutional causes; also: a specific arthritic condition (as gouty arthritis or psoriatic arthritis)”
Let’s dive in a little deeper…
Most of us hear the word arthritis and think of the form called
“osteoarthritis” and yet we use the word “arthritis” as if it is
interchangeable with the word “osteoarthritis”. We
all know someone, usually an older person, who has arthritis…in fact,
it is so “accepted” as the norm that many elders will say something like
“oh, it’s just my arthritis acting up” if you ask why they are moving
with caution in some way. Our culture/society expects this because it’s only natural as one ages. But why do we accept pain as acceptable…it’s not something anyone should have to experience.
Merriam-Webster dictionary defines Osteoarthrtits (OA) as: “arthritis
typically with onset during middle or old age that is characterized by
degenerative and sometimes hypertrophic changes in the bone and
cartilage of one or more joints and a progressive wearing down of
apposing joint surfaces with consequent distortion of joint position and
is marked symptomatically especially by pain, swelling, and
stiffness—abbreviation OA; called also degenerative arthritis, degenerative joint disease, hypertrophic arthritis”
OA is NOT what children with juvenile arthritis have! Juvenile
arthritis is a form of rheumatoid arthritis and more specifically is
differentiated from OA because it’s an autoimmune arthritis. Juvenile arthritis is not NATURAL in any of its various forms. Yet,
many families experiencing JA have heard at one point or another,
something to the effect of “Oh, I know about that (referring to JA), I
get arthritis in my …” or “My grandma has arthritis…” or “I had tennis elbow and that really hurts…” All of these comments are very well-intended. They are a way of showing compassion or an attempt to relate to a disease that many know very little about. But
as a parent or a child/teen dealing with the disease, these comments
are incredibly frustrating to hear spoken aloud because we painfully
know that osteoarthritis is not synonymous with Juvenile arthritis in
any way shape or form; except that they share one commonality in that
the diseases both affect joints. Juvenile arthritis (also known as juvenile idiopathic arthritis and juvenile rheumatoid arthritis) is an autoimmune disease.
Merriam-Webster defines rheumatoid arthritis as: “a
usually chronic disease that is considered an autoimmune disease and is
characterized especially by pain, stiffness, inflammation, swelling,
and sometimes destruction of joints—abbreviation RA; called also atrophic arthritis”
and autoimmune is: “of, relating to, or caused by antibodies or T cells that attack molecules, cells, or tissues of the organism producing them”
and atrophy (verb: atrophic) is: “decrease in size or wasting away of a body part or tissue; also : arrested development or loss of a part or organ incidental to the normal development or life of an animal or plant”
Juvenile arthritis (JA) comes in many forms and severities range from one end of the spectrum to the other. Just as the various 100 plus forms of JA differ, so does the treatment. Researchers are still learning about JA; there is still so much that is unknown. And
even if one treatment plan works for one child with the very same form
of JA as another, it doesn’t guarantee it will work for every child with
that form. Each child is an individual. Thus the challenge for pediatric rheumatologists is great.
I
know that families who read our blog, especially whose child is newly
diagnosed, may worry even more after reading about Parker. But
I want to reassure families to remember that just because something
doesn’t work (or does work) for our child, doesn’t mean the same will
happen if the treatment is used for their child. I have heard that some families get really scared after reading about Parker. We
never intended to scare anyone, but we do ALL desperately need a cure
for our children no matter where we are at in this JA journey. Parker does have a severe and progressive form of JA called systemic on-set juvenile arthritis (also known as still’s disease). Recently,
we have learned that even with systemic on-set there are some who have
less than 5 joints involved (oligo) and some who have more than 5 joints
involved (poly) and that it’s children who are poly in nature that seem
to have a more progressive form of the disease and that children with
systemic on-set seem to have more immunology issues. For readers who are
not familiar with systemic on-set JA, these children not only have
joint involvement but also can have issues with rashes, fevers, and
inflammation in any organ in the entire body (source: http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html).
Our
family has chosen to be vocal about our experiences because we feel it
is one way we can raise awareness and advocate for what is needed for
ALL CHILDREN with autoimmune diseases. They
ALL deserve equal attention and we really feel that if researchers
could figure out one autoimmune disease, it would help with making
progress on all autoimmune diseases.
 |
| Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset |
So tonight the rain clouds drifted away as we watch the sunset on another glorious day. We send out love to all families dealing with Juvenile Arthritis in any size, shape, or form. May we all see a CURE become reality for our future children!
IAAM's JA Awareness MOVEMENT....
Thank you for being the next Guest Blogger on
both of my blogs. You are so wonderful for sharing your Personal JA Story. If you have
any questions
for mom, dad, big brother, or this little warrior Parker, please go to their blog, Parker's Purple Playa Power..Pounding JA. "A mom, dad, big brother, and warrior sharing our perspectives of
Juvenile Arthritis, a painful autoimmune illness affecting joints and
internal organs…JA affects over 300,000 children in the US and many also
have other autoimmune illnesses. There are multiple forms of JA; some
less severe than others. Parker has system onset JA with overlap
syndrome, along with severe allergies and asthma. Although there isn't a
cure yet; we proudly pound at JA together with HOPE for a cure!"
Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers all month long!!!!
If you have a JA Personal Story you would like
to share, please email your story to Dana at danalm_iaam@yahoo.com with
your title, blog name and URL, your name as you would like it published
on my two blogs and on IAAM's Facebook Public Pages. If you do not have
a blog, that is OK, you can still share your story, simply send me your
story in a Word Document with your picture attached and I will put it
into my blog for you. It is that simple. ;-)
I also want to let all the JA
parents out there (and JA supporters and advocates) that IAAM initially launched our Juvenile Arthritis Awareness Movement Monday, July 9th, dedicated to set a new standard in JA awareness :). We started the campaign by hosting a
Video Contest
unlike anything seen or done before--but until now awareness has not
reached an acceptable level so we are going to change all of that!
This initial campaign, a 60 secondish video commercial competition for YOU to help blast dozens of short messages to the world so others can
understand. The subject? JA and OA: Differentiating Arthritis. These short
segments should simply show WHY JA is different than OA.
Because people are not always comfortable with new things, our video idea
is a totally new idea, we want to make sure everyone has a chance do a good job, and
we want to make sure we have enough time to make it fun for everyone, IAAM CEO Tiffany
Westrich is using her time to host her "training sessions." Tiffany is extremely talented at her
training sessions, and they should run long enough so that everyone gets enough help to understand how to do the videos and turn brainstorming concept into imagery. She will also tape the training sessions like a
course on brainstorming concept to imagery, which she taught in
college. We will launch a new call for videos from the 16th through the 30th
of August.
Voting will take place in September. 3 Finalists will be selected, resulting from IAAM voting and 20%
PUBLIC voting so you can blast that sucker everywhere! One Grand Prize winner
(selected in October) will receive a complimentary rental house7 night stay, 4 bedroom, 3 bath
property in Orlando Florida just a few miles from Disney and Universal Studios.
Prize donated by FloridaHolidayHomes4U. Restrictions apply.
We KNOW you can say what the differences are, but if you aren't sure
how to put those words into an effective video HAVE NO FEAR! As part of this
initiative, remember that Tiffany, IAAM CEO and Founder, happened to also teach advanced
design at a college level, which included how to take concepts into imagery. She
is the one who designs all of our posters and videos, and she is donating her
time to personally teach you how to do it too!
Interested in learning more?! Awesome! Email JAContest@IAAMovement.org for more
details!!!
IAAM's Juvenile Arthritis Awareness Movement has begun!
Time to put your thinking caps on and decide how YOU would like to see JA
differentiated from OA in short, impactful video form...and IAAM will TEACH you
how to make your visions a reality! Sign up today to participate at
JAContest@IAAMovement.org!
WATCH THE VIDEO: http://www.youtube.com/watch?v=DmfsJ4IP9_E&feature=g-upl
In the meantime, I am hosting a Blog Carnival on my 2 Blogs
and facebook Public Pages. Please send your blog posts to Dana at
danalm_iaam@yahoo.com. The Blog Carnival should help with your
brainstorming of ideas for the making of your video for the JA Video
Contest. The Topic for the Blog Carnival is also JA and OA: Differentiating Arthritis. WHY is JA different than OA? All Blog Carnival submissions are due July 27th and will go live on August 4th.
