|Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset|
Wednesday, July 11, 2012
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.
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!