Posts by: "Juvenile Arthritis Association"

James Swanson was diagnosed with juvenile arthritis (JA) at the age of nine after an excruciating night of pain while on vacation with his family. Living with juvenile arthritis has taught James the power of positive thinking and how to turn obstacles into solutions and lessons.

“When I was diagnosed with juvenile arthritis, my world was flipped upside down. I had no real support system. I was exposed to the idea that I was absurd. I didn’t like telling people, because I didn’t want the attention. I felt like there were people who are facing terminal situations. It wasn’t till my college biology studies that I realized solving my problem could lead me to solve other problems and help more people.”

Wanting to help others with JA, James reached out to Juvenile Arthritis Association (JAA) with a bold plan to raise awareness and funds — and, most importantly, to show kids, teens and young adults with JA that the disease does not define who you are.

Starting today, July 23, 2017, James will get on his mountain bike and compete in The Colorado Trail Race, a 500+ mile trek that will take him from Denver to Durango in beautiful Colorado. Riding the trail is not an easy feat — with or without JA — as it traverses several mountain passes and reaches over 13,000 feet in elevation.

The ride typically takes nearly a week to complete, and JAA will be posting about James’ progress as he makes his way to Durango. To support James and the 300,000 kids with juvenile arthritis to whom he dedicates his ride, please do one or more of the following:

1) Make a tax-deductible donation to Juvenile Arthritis Association using the donate button on our facebook page or our website.

2) Send encouragement to James on our social media.

 Use the hashtag #CTR4JAA

Facebook: facebook.com/juvenilearthritis

Twitter: @JAAssn

Instagram: jaassociation

3) Share our social media posts this week to help bring awareness to juvenile arthritis!

More about James

When he’s not training on his bike, James —through his company, Utility Advertising — helps individuals, brands, and nonprofits scale their operations by developing innovative communication strategies and action steps to reach their customers.

Sponsorship

James’ ride is made possible due to the generosity of the following sponsors.

VASA Fitness
“VASA was my first real sponsor. Their belief in helping people accomplish great feats shows their commitment to improving the lives of individuals that want to be better.”

Swanson Pro Clean
“Swanson Pro Clean is my main emergency support along the trail. They will carry repair supplies, some food, and will be my contact for communication. At the end of the trek they will also be my ride home.”

The Colorado Trail Foundation
“It is my belief that people care more about things they are involved in because they have a vested interest. I am grateful for the opportunity to ride and experience the natural beauty of Colorado.  The resources they create are not only important to understanding the route, but also the historical and biological foundation of the environment.”

 

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Two weeks ago at the Cannes Film Festival, a parade of aging action stars, including Sylvester Stallone, Arnold Schwarzenegger, Harrison Ford and Mel Gibson, rode into town on tanks to promote their latest film The Expendables 3. At a press conference following the parade, Mr. Stallone was asked when he and his cast mates would be too old to continue making action movies.

“Let me tell you something,” Stallone responded. “We are children with arthritis. We are forever young.” The crowd went wild, erupting with cheers and laughter. The film’s director, Patrick Hughes, then chimed in: “We are going to put that on the poster: Expendables 3, featuring children with arthritis.” More laughter.

Mr. Stallone’s quote was the headline or the prominent quote featured in nearly every major news story covering Cannes that weekend, from CNN to the BBC.

If you are a parent or family member of someone with juvenile arthritis, these comments may have made your blood boil. You may be outraged at what appear to be ignorant, insensitive remarks at the expense of your child or loved one. And, perhaps, you want the perpetrators of these remarks taken to task and the record set straight.

JAA received a number of requests to reach out to Mr. Stallone. We contacted him both through a mutual friend and through official channels, and we were assured that Mr. Stallone meant no offense by his remarks. We have no doubt that this is true. Celebrities — particularly an American icon like Stallone, who has been in the public eye for over forty years — are usually well versed in public relations and don’t seek to offend sick children, particularly at a press conference.

Though Mr. Stallone will likely not make this faux pas again, he is also unlikely to address it further. When Stallone referred to himself and his cast as “children with arthritis,” he was trying to create an oxymoron, using “arthritis” as shorthand for “old.” And, like it or not, that’s an ingrained association — and one that’s not entirely inaccurate. Over 90% of arthritis is osteoarthritis, which is degenerative. While osteoarthritis does affect a number of younger people as well, it is a sign of the body wearing out, so its association with aging is fairly unassailable.

Judging by the audience’s reaction, everyone in the room took his comment exactly as it was intended. Further, given that the international press unflinchingly ran Stallone’s quote as a headline, it’s safe to say that they did not see the remarks as anything other than humorous.

Can we really blame them? Think about it. Did you know that juvenile arthritis existed before your child was diagnosed? We certainly didn’t. Nor did our friends and family.

May was National Arthritis Awareness Month. The fact that the biggest headlines by far about arthritis were Mr. Stallone’s comments just speaks to the dire need for much, much, much more awareness. Juvenile arthritis isn’t a new disease, but it may as well be for all that people have heard of it. Efforts to raise awareness of juvenile arthritis have ostensibly been ongoing for more than 60 years, but have obviously been unsuccessful to date.

Albert Einstein said that the definition of insanity is “doing the same thing over and over again and expecting different results.” So, how do we get different results? How do we make the world aware? For starters, we suggest a simple yet significant change in messaging:

We need to stop telling the world that kids get “arthritis.” Kids don’t get arthritis, as most people think of arthritis. Kids get juvenile arthritis.

The biggest obstruction to juvenile arthritis awareness is the constant conflation of all forms of arthritis. Juvenile arthritis constitutes little more than one half of one percent of the arthritis population, and it’s completely different from osteoarthritis, and yet we keep saying that kids get arthritis. Messages that kids have “arthritis” confuse the public and rob our children of the attention, urgency and funding that they deserve.

When the average person hears, “kids get arthritis,” what goes through his head? Probably something like this: “Huh. Weird. So, do these kids have the disease in that Brad Pitt movie where they age really fast?” (Note that progeria, which affects just 250 children worldwide, has gotten more press than JA.) Then perhaps he thinks: “I guess they must have trouble opening jars until they pop a Tylenol, like in the commercials. But kids shouldn’t be opening jars anyway. Their moms can do that for them. Glad that’s solved.” The end.

Have you ever noticed that no one ever talks about kids getting diabetes? They use the term juvenile diabetes. The two words are joined at the hip— always together.

However, that wasn’t always the case. Forty or fifty years ago, “diabetes” might have been used as shorthand for “overweight,” and people scratched their heads at the notion of kids getting this disease. That’s because, much like the situation with arthritis, 90% of diabetes is the lifestyle-related type 2, and 80% of those with type 2 diabetes are, in truth, overweight.

In 1970, some parents founded the Juvenile Diabetes Research Foundation to raise funding and awareness specifically for juvenile diabetes, the autoimmune form that affects kids. For the past forty years, JDRF worked diligently to differentiate juvenile diabetes in the public’s mind from the general term “diabetes.” And the results speak for themselves. Today, no one confuses the two forms. There are no jokes at press conferences. Juvenile diabetes is taken seriously and regarded as a disease worthy of attention — and funding.

Currently, juvenile diabetes receives $200 million in private funding annually —over 100 times the funding going to juvenile arthritis, which affects twice the number of kids. Messaging matters. The proof is in the pudding.

Juvenile arthritis may constitute just a tiny fraction of the arthritis population at large, but in terms of children’s diseases it’s a monster. It’s one of the most prevalent diseases affecting kids. And yet virtually every other children’s disease stands on its own, often out-fundraising its adult counterpart.

The fact that juvenile arthritis has almost zero public awareness — and receives only a miniscule fraction of the funding it should — is testament to the fact that the current terminology and awareness tactics are simply altogether ineffective.

Until we stop conflating all forms of arthritis, juvenile arthritis will never get the attention and funding it deserves. We are unnecessarily encumbering ourselves with the stigma and ingrained associations that come with the term “arthritis” — associations that we will likely never succeed in changing, because they are based in fact. And those associations are costing our kids millions of dollars in research and support each year.

So, here we are… at the end of Arthritis Awareness Month … with newspapers around the world publishing headlines about children with arthritis… except the “children” they are promoting are aging action stars in combat gear.

But unlike Hollywood, our heroes are real. They are our children, and they are certainly not expendable. We owe it to them to make sure that the world knows their story, takes their disease seriously, and helps to generate the funding that will give them every chance at a bright future.

No one is suggesting that this will be easy. Change is always hard. And juvenile arthritis is an “underdog” disease. But, as Sylvester Stallone has shown better than anyone, an underdog with enough heart can go the distance.

Joel Rothman & Laura Schultz
Founders, Juvenile Arthritis Association

 

Shortly after our daughter Sophia’s JA diagnosis four years ago, a friend asked about her condition. “Are you sure she doesn’t have juvenile diabetes?” the woman questioned, convinced that we had not heard our daughter’s diagnosis correctly from her doctor. “Kids can’t get arthritis.”

Until Sophia was diagnosed with juvenile arthritis, we never knew that this disease existed either. It is not news to the JA community that our cause gets far less attention than many other causes that are less serious or affect fewer people.

It is our kids who suffer most from the lack of awareness. We’ve heard countless stories of children taunted by peers and pressured by teachers because rheumatic diseases are not always evident to the casual observer. Far too many JA kids manufacture a smile rather than try to yet again explain the chronic nature of their disease.

It is not an easy task to create awareness for a disease that is often invisible.
Not easy, but also not impossible. In 1970, a group of parents formed an organization to raise money and advocate exclusively for kids with diabetes, who make up a tiny percentage of the overall diabetes population. Today, the Juvenile Diabetes Research Foundation (now known as JDRF) raises approximately $200 million per year towards research for these kids— about the same amount raised by the American Diabetes Association, whose mission is to support all people with diabetes.

By comparison, private research funding for pediatric rheumatic diseases in the U.S. is about $2 million— 1% of what JDRF raises— and rheumatic diseases affect twice the number of kids. While it took JDRF over 40 years to reach this point, that was before the internet or social media. With the tools we have today, the JA community may be able to achieve similar results in less time.

But first we need to understand how juvenile diabetes became such a well-funded cause. JDRF did two key things: they defined juvenile diabetes as distinct from adult diabetes, and they brought their cause into the public consciousness. You never hear phrases like “kids also get diabetes,” because juvenile diabetes has been successfully branded as its own cause. Further, you see and hear the words juvenile diabetes everywhere—from magazines to parade floats, to the lips of celebrities.

We believe that if juvenile arthritis is going to get the funding that it deserves, it must be defined as separate and apart from the general term “arthritis.” Further, our community must break out of its bubble on a large scale and preach beyond our own choir.

On December 3rd, for the first time in history, the JA community will have a celebrity competing for our cause on national television before an audience of millions of people. While it will be a thrill for all of us to see our cause get this kind of attention, what makes this significant is that the millions of viewers are mostly outside the JA community.

The Chopped audience is going to learn a little bit about juvenile arthritis while they are sitting at home being entertained. The discussion of juvenile arthritis will likely be just a small portion of the episode, but by the end of the show, there will be millions of people who have now heard of our kids’ disease— and they are going to see juvenile arthritis as a cause that a major celebrity deems worth fighting for.

It’s a start.

Joel & Laura
Founders, JAA

Idiopathic: an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

In the late 1990’s, the official classification “Juvenile Rheumatoid Arthritis” was changed to “Juvenile Idiopathic Arthritis.” In layman’s terms, the medical community essentially stated in the very naming of the disease that it does not know what triggers arthritis in children. Further, with the paltry research funding currently going to JA, we are not likely to have these answers any time soon.

Against this backdrop, we would like to address the recent New York Times article The Boy With a Thorn in His Joints both on behalf of JAA and as parents of a child with juvenile arthritis.

For those who haven’t read it, the article is written by Susannah Meadows, a regular contributor to the Times who writes the Newly Released column. Ms. Meadows chronicles her family’s struggles when her then-three-year-old son, Shepherd, is diagnosed with juvenile arthritis. Though she initially accepts her doctors’ prescription of NSAIDs and then methotrexate, she quickly begins to get cold feet, resists her doctors’ recommendation to increase the dose of methotrexate, and seeks out alternative treatment in the form of a gluten and dairy-free diet for her son, coupled with a Chinese remedy called “four marvels powder.” Six weeks after treatment begins, the boy’s disease goes into remission.

While the author makes the disclaimer that she doesn’t know for sure if it was methotrexate or dietary changes that brought about Shepherd’s remission, she states that she believes it was the latter.

The story is well written and has an undeniable emotional pull, especially for those of us who have lived through something similar. The depiction of what a family goes through after their child is diagnosed with juvenile arthritis, and how the strain affects the marriage, hit very close to home for us. Identifying with the author, we followed her family’s journey almost as if it were our own … right up until the part where her son suddenly went into remission after just six weeks — a fantasy we had when our daughter, Sophia, was first diagnosed that’s now a distant memory.

Even though we celebrated Shepherd’s remission, we find aspects of the article troubling in several important respects, made all the more so because this six-page spread in the New York Times is the most prominent coverage that juvenile arthritis has received since we can remember. From the outset, let us state that we are in no position to judge whether Shepherd’s arthritis was triggered by problems in his gut, as Ms. Meadows strongly suspects in the article. Indeed, JIA, by definition, stems from an unknown cause. Shepherd tested negative for celiac, a rheumatic disease known to be caused by gluten intolerance. That said, anecdotally, we know several children with JA and adults with RA who have had positive results with gluten-free or other dietary regimens in addition to their medication.

But the implied promise in Ms. Meadows’ article — that, like her son, many others could free themselves entirely from lives of permanent sickness and dependence on pharmaceuticals by being willing to think outside the conventional medicine box — is a dangerous and slippery slope. This is not a peer-reviewed medical journal article about a scientific study with proven results. Given its prominent placement and the ensuing hubbub, it’s easy to get carried away with excitement and forget to see the article for what it is: an anecdote, one story among many, and entirely subjective.

While the prospect of weaning our kids off of pharmaceuticals is extremely enticing, a recent response to the New York Times article in Slate magazine suggests that Shepherd may actually be taking strong medication. The chemicals inside the Chinese “four marvels powder” include quercetin, berberine, and achyranthine. Quercetin, though shown to have anti-inflammatory properties, kills mice at about the same dosage level as methotrexate, suggesting that it is far from benign. Berberine, meanwhile, has been linked to brain damage in infants. What’s more, Ms. Meadows is giving her son these chemicals via the “four marvels powder” in unspecified quantities daily, and there is no current scientific knowledge on safety, proper dosage, or side effects. As the Slate article proposes, Ms. Meadows’ phobia of pharmaceuticals may be blinding her to some of the realities of her son’s condition.

In addition to gluten, for example, Ms. Meadows points to antibiotics as a possible culprit for her son’s subsequent flare-ups (which, one might note, would indicate that he’s not truly in complete remission). What she doesn’t consider, however, is the possibility that the underlying infections that required her son to be treated with antibiotics triggered the flare-ups, rather than the antibiotics themselves. It stands to reason that when an infection is present the immune system is activated and, in addition to attacking the infection, it may attack the joints, causing a flare-up.

This theory, which was proposed by our pediatric rheumatologist in Sophia’s case, has been consistent with our experience. Sophia, who has been in a medicated remission for most of the past three years, has experienced mild arthritis symptoms with almost every major infection, regardless of whether she has taken antibiotics. It may be that only infections serious enough to require antibiotics are problematic for the author’s son. This is not to say that antibiotics are harmless. However, they serve a purpose, and let’s not forget that prior to antibiotics people routinely died from what are now treatable infections.

Similarly, prior to methotrexate and, more recently, biologic medications, children with juvenile arthritis were far more often crippled and wheelchair-bound. What were regarded as miracle drugs when they were discovered are now coming under suspicion as our society trends toward more “natural” remedies. Whether or not there is truth to the leaky gut theory, and there may be in some cases (there are over 100 forms of arthritis, and possibly a similar number of triggers), discounting proven medical treatments that have changed the face of this disease, as the author does, would be rash. The reality is that these are the only clinically tested treatment options and likely the best hope by far for most JA patients.

We worry that parents of newly diagnosed patients in particular, already fearful of the drugs their child is being prescribed, will latch onto Ms. Meadows’ overarching message to be wary of conventional medicine and may forego treatments critical to giving their child the best chance at remission. An important 2011 study presented at the Annual Meeting of the American College of Rheumatology demonstrated that early and aggressive treatment improves the odds of clinical remission for children with arthritis. What’s more, the study suggests that the longer the disease is allowed to remain active, the less likely it will respond to drug therapy. In other words, children whose parents are hesitant to pull the trigger on early, aggressive treatment may miss their best window of opportunity to achieve remission.

As parents, we understand the inevitable qualms of starting up not-entirely-benign treatments, particularly ones with scary potential side effects and black box warning labels. However, in Sophia’s case, her uveitis was already so severe at diagnosis that saving her vision was paramount. Our doctors told us up front that if she did not begin methotrexate, Remicade, and steroid eye drops (all of which were quickly increased to the FDA maximum guidelines), Sophia could be blind in a matter of months. So, we felt that pursuing an alternative course of treatment would have been patently reckless. In the ensuing years, we have never tried dietary changes, mostly because the medications have been so effective that it seems superfluous, and we hate to deny our child cupcakes when she already undergoes so much poking and unpleasantness.

While we have no personal experience with alternative approaches, we know families who have experimented with diet in lieu of medication in the hopes of finding the cause of their child’s autoimmune disease, all to no avail. Even the comments section following the article contains accounts from people who have tried very similar approaches to Ms. Meadows’ (though without medication) and sustained irreversible damage in the process. Of course, all of these accounts are as anecdotal and subjective as hers, but the point is that results can vary widely. Ms. Meadows’ story may be one of those best-case scenarios, one of those rare stories that we cling to but which, unfortunately, does not represent the course of events for most of us.

At the same time, we absolutely appreciate the hope that an article like this can give. Personally, we believe that alternative medicine used in conjunction with conventional medicine may be very effective for some people. Further, we believe that conventional medicine has a long way to go in terms of testing, studying, and integrating complementary medicine. Few peer-reviewed scientific studies have been done on the connection between diet and autoimmune disease control.

And this brings us to our most significant concern. As the founders of JAA and as parents working to raise the profile of juvenile arthritis, we deeply worry that this article may ultimately do the cause a disservice by allowing uninformed readers to think that this is a disease that can be managed with diet and thus doesn’t require or deserve further research. If the general public takes from this article that juvenile arthritis is simply a food intolerance or allergy, as opposed to a complex, serious disease on the level of juvenile diabetes or cancer, there may be lasting repercussions for the entire JA community for years to come.

Indeed, we have personally received dozens of emails over the past week from well-meaning friends eager to alert us that, perhaps, Sophia can simply adjust her diet and finally come off the Remicade and methotrexate she’s been taking for three-and-a-half years. And the author has been widely praised in the comments section for trusting her maternal instincts over her doctor’s recommendations. However, if this were an article about a mother favoring dietary changes over conventional treatment for her child with cancer, we suspect that the response would be different.

While it’s exciting to see some attention focused on our children’s disease for once, if we are going to truly raise awareness, we need to think about the messaging. Currently, juvenile arthritis receives about 1% of the research funding going to any other major childhood illness. This is due in part to lack of awareness and the erroneous misconception that it’s not a serious disease — a viewpoint that might be encouraged by this article, which, incidentally, was one of the most emailed articles in the New York Times this past week.

If we want to change the status quo, we need to emphasize the seriousness and complexity of this disease, the need for more research (including research into alternative approaches), more doctors, more treatments, and certainly not depict juvenile arthritis as some form of food intolerance. After all, whatever the cause and solution to our children’s disease may be, we won’t have any real answers without further research, and we won’t close the funding gap until the general public recognizes juvenile arthritis as being as worthy a cause as juvenile diabetes or cancer.