“Chronic”

 

chronic

The multiple conditions classified as forms of juvenile arthritis are all considered “chronic” illnesses.

“You should expect that, your child has a chronic illness.”

What does that mean, exactly? According to Wikipedia:

  • A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects. The term chronic is usually applied when the course of the disease lasts for more than three months. 

It goes on to say that the World Health Organization reports that chronic, non-communicable conditions are the leading cause for mortality in the world, responsible for 60% of all dealths. And my child has one.

The Wikipedia definition is texbook, and although the definition states that the term “chronic” is applied after more than three months, with Juvenile Arthritis, it is forever.

Forever is a strong word. It means always- no end in sight, always lurking in the background, always running as an undercurrent to every single thing they do, every dream they have, EVERY thing. There is no cure, although there is always hope for remission. Even in remission, there is always the worry that it will come back in full force. Its not just a “chronic” condition, its a “chronic” worry as well.

We think about arthritis every morning when my son gets up. Is he stiff? Is he walking ok? Does this look like it will be a good day?

We think about arthritis during the day. The phone rings, and I wonder if it’s the school calling to come get him. Did he start running fever? Is it the doctor with test results? Is he feeling ok, or just stuck at school miserable?

It permeates every special event. Will he be able to keep up with his cousins? Can he last more than half a day at Disney without a wheelchair?

It is something we think about every night, hoping tomorrow will be better than today, and maybe, just maybe, he will find himself in remission. (and then we will wonder when this cycle is starting over again, hanging on every little ache, pain, fever or sign that our nemesis has returned.)

THAT is what life is like with a chronic condition like autoimmune arthritis. Now add in the other factors, like people who don’t understand what it means to have a chronic illness. The people who say “isn’t he over that yet?” or ” don’t you think he/you are blowing this a tad out of proportion?” At one stage of the game, we needed a small rollaboard suitcase just to hold medications for the week. A whole suitcase full of medications for one child, for one week, just to be told, “well, he doesn’t look sick!” even though it takes a whole suitcase full of meds to keep him “looking so good,” and knowing that looks are deceiving.

Chronic means living at the doctor a lot instead of living at the park, grandma’s or a friend’s house. Chronic means planning meals so that what you eat doesn’t conflict with what meds you are taking, or so that you are able to take them on time, on a full stomach, empty stomach, whatever they say…. or so many hours apart from the other drugs that  must be taken separately, that also require a full or empty stomach. Meals/snacks are dictated by when medicine is due, not by when you are hungry or “normal”  meal times.

Chronic means knowing exactly what your phsyical limits are so you can do just enough to enjoy your life without crossing the line to overdoing, and making your situation worse.  Living with a chronic illness is like constantly performing a juggling act that very few in the audience pause to appreciate, but the show must go on.

And the show MUST go on. That’s why we don’t feel sorry for ourselves. (well, sometimes we do! But we don’t  dwell there.) We are lucky, we are blessed, yes even with a chronic illness! My children are still here with me, fighting this disease, so we have EVERYTHING to celebrate. Living like this has given us a glimpse into a life we didn’t know. It has made the good times sweeter, the healthy, pain- free times fantastic, and given us an appreciation for life and health that many will take for granted.  The “others” may never know the true joy of the gift (good health) they have been given, but we do. We no longer have blinders on- we understand the “invisible” illness of others, and are so much more sympathetic and empathetic than the uninitiated. We are now ambassadors for others in this situation, spreading awareness, educating, and making the world just a little better, righting one misunderstanding at a time.  We are stronger than the disease, not letting it stop us even if it alters the way we can do things. We persevere, and do you know what?

We are also “chronically” optimistic.

We are also “chronically” grateful.

We are “chronically” hopeful that others will finally “get it” and join us in our quest to eradicate this condition, because we know it can be done.

Recently, I came across this article from a publication in the UK. It said that arthritis research was a “neglected” area, and under-invested compared to other conditions. It goes on to say :

Prof John Isaacs, Newcastle University’s professor of clinical rheumatology and director of the Institute of Cellular Medicine, said: “It’s a neglected medicine in that it’s not a ‘sexy disease’ like cancer or heart disease but in a lot of ways it can have a more devastating effect on patients.

“Some cancers can be treated, but once you’ve got rheumatoid arthritis then you have it for the rest of your life. We think it’s curable with investment, but without that investment there’s not a lot we can do.

“Many people think it’s an old person’s disease but this is a disease that can affect children. One third of typical rheumatoid arthritis patients stop working within the first five years, not because they want to but because they can’t continue.

Our chronic illness, could be curable with your help. Aside from the pain and suffering, the cold hard facts are that invesment now could save spending later. Less healthcare costs, less taxpayer dollars, less disability. Even if you think you are not affected, you are. Not only are your tax dollars shouldering some of this rapidly growing burden, but with rates like one of every 250…your child, your niece, nephew, neighbor or grandchild could be next. Consider the following statistics from the Juvenile Arthritis Association:

Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal. 

A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined. 

Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.

Disease Prevalence——- ——————Private Funding (Annual) 
Leukemia 1 in 25,000———————- -$270m 
Juvenile Diabetes 1 in 500—————— $198m 
Muscular Dystrophy 1 in 10,000 ———–$157m 
Cystic Fibrosis 1 in 2,500——————— $126m 
Pediatric Rheumatic Diseases 1 in 250 ——$2m

 

Pediatric Rhematic disease…the condition with one of the of the highest prevalences, potentially fatal, most severely underfunded, but with good potential to cure with investment.

We wiped out polio. We eradicated smallpox. With some time and attention, could Juvenile Arthritis be next? Help us spread the word, help us raise funds, help us raise awareness and encourage investment in research. Write your congressman, or other govenrment official. We can do this, because NO child should be living like this when our effort could change it. No one should have to hear “you should expect that, your child has a chronic illness, that’s just the way it is.”

It doesn’t have to be, and it starts with you.

 

Please use the contact tab if you would like more information on how you can help.

 

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Comments:

  1. Thankfulness to my father who shared with me concerning this weblog, this webpage is in fact
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  2. elizabeth says:

    Really great blog. I forwarded it to my Mom so she can understand this disease better. So many people just don’t understand this disease and what we as parents go through. I can identify with you so much and understand as my son has systemic JIA. We must keep spreading the word about this disease.

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