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AFamilies
News for kids and young adults affected by juvenile arthritis and their families
Fall 2012

 

Articles This Issue

Welcome

Faces of JA
Learn how the McCarty family fights on behalf of kids with juvenile arthritis. 

Growing Up With JA - Tales of Transition
Alyssa Long shares how juvenile arthritis shaped her career path and refocused her goals.  Read her story

Jingle for JA
Local kids and teens with juvenile arthritis lead the charge at Jingle Bell Run/Walk events. Read their inspirational stories!

Oral vs. Injected Methotrexate in Kids
A new analysis suggests they may be equally effective in juvenile idiopathic arthritis.  Read the results.

Juvenile Arthritis and Sleep
We all know that a good night’s sleep is important to functioning at our very best.  Find out why it might not be enough.

Photo Postcards

Community Connections

Get Connected

 


 

 

Welcome to the First Issue of AFamilies!

 

AFamilies is the e-newsletter for kids, teens and young adults affected by juvenile arthritis, their families and all those who support them. It's a publication for those who live in the Arthritis Foundation, Great West Region.

AFamilies merges two of our former juvenile arthritis publications… JA Jambalaya and the Kids Get Arthritis, Too newsletters. This new e-newsletter will be presenting you with stories, perspectives and resources from across the entire Great West Region, which includes Alaska, Colorado, Idaho, Montana, Oregon, Utah, Washington and Wyoming.

We hope you enjoy AFamilies!

 

 


 

Faces of JA


The McCarty family fights on behalf of kids with juvenile arthritis.
 
Jeanne McCarty never felt like an advocate. Like most parents, she and her husband Dennis had worked hard to make sure they stayed on top of their daughter Christina’s disease when she was diagnosed with polyarticular juvenile idiopathic arthritis (JIA) at age 3. It was a long, hard road of unpredictable flares, swollen, stiff and sore joints and chronic ear infections because of Christina’s compromised immune system. They had done their very best to work with Christina’s doctors to ensure she was getting the best care and treatments.

It wasn’t until 6 years later when Jeanne McCarty was in Washington D.C. for the Arthritis Foundation Advocacy Summit; speaking to her state senator about her daughter Christina’s juvenile arthritis, that she realized that she had been an arthritis advocate all along.

“When I was there speaking out about JA, I realized I knew a lot more about arthritis and advocacy than I thought I did,” Jeanne remarks. “I had been advocating for Christina for so many years – to our health insurance company, to her doctor’s and health care team, to friends and classmates… I guess I had been an advocate in my own way since day one.”

The family’s experience at the Advocacy Summit helped them truly grasp the importance of advocating on behalf of kids with arthritis.

“This disease is real. It isn’t going away. It affects our kids,” Jeanne says. “I really came to terms with the fact that if I wasn’t Christina’s voice, or my husband wasn’t Christina’s voice, who would be? The Arthritis Foundation had given us the tools to be that voice.”

Beyond advocacy, the McCarty family has been involved with nearly every area of the Arthritis Foundation’s programs, events and mission. Their connection to the Arthritis Foundation began in 2005 when they spotted an Arthritis Walk flyer in their doctor’s office.

“When we saw that flyer, we knew we had to go to that Spokane Arthritis Walk that year. It was a chance to meet other families and get connected to others that knew what we were going through,” Jeanne says.

In 2005, the family also attended the National Juvenile Arthritis Conference in Rhode Island to learn more about ways to manage Christina’s JIA. That year, they also began attending KAT-FISH Camp in Washington; a camp for the whole family.

“Christina went to camp that first year and LOVED it,” Jeanne says. “She told me when she got home that she had so much fun because she could be around other kids like her that understood her.”

Over the years that followed the McCarty’s support of the Arthritis Foundation increased more and more. They took on leadership roles on the committees for the Spokane Arthritis Walk and helped to re-launch the Spokane Jingle Bell Run/Walk. The McCarty family’s drive and commitment to the Spokane Jingle Bell Run/Walk has helped the event grow in leaps and bounds since that time.

Christina, now 11, is in remission thanks to her medications. She participates in advanced ballet and cross country, and is an active, social pre-teen.

Despite Christina’s remission, Jeanne looks cautiously toward the future, “Every day we hope that tomorrow isn’t the day when she flares.”

Even with their uneasiness, the McCarty family’s commitment to advocating on behalf of kids with arthritis has helped them maintain an overall positive outlook and hope for a better future for Christina.

Jeanne sums it up as, “I look at it like this… as a parent of a child with JA sometimes it feels like you’re struggling and it’s like you are hanging on to a rope. Things may get harder and that rope may dwindle down to a string; that string may dwindle down to a thread; that thread may snap and you may fall… but you get up. Tomorrow is a new day. There’s light at the end of the tunnel and life with arthritis will get better.”

Contact your local office of the Arthritis Foundation to find out ways you can get involved, just like the McCarty family.

 


 

Growing Up With JA - Tales of Transition

Alyssa Long

Seattle, WA
Diagnosed with Juvenile Rheumatoid Arthritis at age 15

 

 

Diagnosis

Diagnosis Story:
“A couple of months after my 13th birthday, I started having what I thought were growing pains. I didn’t tell my parents at first because I thought it was no big deal, and the point when I realized it was more serious is a very clear memory. I was sitting in the front seat of the car (I have three younger brothers; shotgun was a very important distinction in our house) and  I went to open the door and couldn’t curl my hand around the handle. There was this aching pain and my joints were very stiff. After two years of repeated doctor’s visits, I was finally diagnosed with JRA.As of last March, I have officially been sick for longer than I was healthy. It’s a somewhat strange anniversary to keep track of, I will admit, but my disease is also a large part of the way I keep track of my history.”

Symptoms:
“I have pretty typical RA symptoms: aching pain, swollen/red joints, red rash and fatigue. My disease as it is now effects mainly my larger joints (hips, knees, ankles) but when it first started, my fingers and toes were the most noticeably affected.”

What are some of the challenges and ups and downs you’ve had since diagnosis?
“Pick a day! In the beginning, it was straight up just dealing with the pain and fatigue. It took at least a couple of years (and starting a biologic medication) until we got the medication dosages right and I started to even out.

I was not as good as a teenager about setting boundaries or saying no, so I would often wear myself out. It’s very difficult when you’re 17 or 18 to say no to pizza night with your friends in favor of going to bed early. Most people would be just a bit tired the next day; for me, it would be an all-consuming exhaustion.

My challenges at this point in my life are of a different sort; now I have to get up and deal with my RA but also deal with being a responsible adult! It adds an extra layer of difficulty to the everyday problems.”

 

Career Aspirations

What were your career aspirations pre-diagnosis?
“When I was a young teenager I wanted to be Jane Goodall and go sit in the leaves observing monkeys. When I was graduating high school I thought I would be a sign language interpreter.”

Once you were diagnosed with arthritis, did your career plans change?

“I realized fairly quickly that doing sign language all day, every day, was just impossible for my hands. I’ve had quite a few plans since then, and will probably have quite a few in the future. I feel like I know myself so much better now than I did at 18, and likewise I know my disease (and its limitations) better.”

Did arthritis influence your job training, schooling, etc.?

“My arthritis absolutely influenced it. Stress is the biggest factor when I have a flare, and I’ve had to get a lot more realistic about what I can deal with. There have been a lot of stops and starts and changes in directions when one thing doesn’t work. It can be disappointing, but I’ve ended up in a job and a place I love, and I would not be there if not for my arthritis.”

What is your current job?

“I’m currently employed at Harborview Medical Center, which is a local hospital. Most of the time I’m at the front desk, so I check in patients, do paperwork, check insurance, basically make sure the administration side of the clinic runs smoothly. I also back up the Patient Care Coordinator for Hem/Onc, so some of the time I do whatever needs to happen to support the doctors in that clinic.”

Did you disclose your arthritis in the interview and hiring process?
“Absolutely! It’s just easier for me. I’ve worked in jobs where I didn’t disclose it immediately, and it nearly always led to difficulty later on. Plus, for this particular job, I felt it made me uniquely qualified. I have spent a very long time being a patient, and knowing how it feels to be on the other side of the desk gives me a little more patience sometimes. I think that it actually did help get me hired, which is a bit of a change of pace!”

How does your arthritis affect your work – physically?
“My job is more physical than you might think. I’m up and down and running around finding patients and locating paperwork and whatever else I need to do all day . I’ve been having a lot of trouble with my hip lately, so getting in and out of chairs and walking the back hallways endlessly isn’t always very comfortable. Luckily, I work with a group of amazing and supportive people and when I don’t feel good, they step in. This is where disclosing has really helped me out; in an environment where my arthritis is known and talked about (and where a large portion of the staff are nurses!) makes it really easy to ask for help, or to just get help unasked.”

How does the perspective you have gained from having arthritis influence your work?

“Over the years I have had really great experiences at doctor’s offices, and I love being able to be part of someone else’s good experience. I know exactly how much someone smiling and asking you how your day was, or telling you that they’re glad to see you, makes a difference. I’ve gone to my rheumatologist for years because I love my doctor, but also because I get very personal care from everyone else. I love being that for our patients, trying to remember their names and what’s going on in their lives. I really think it makes a difference, and that belief is what gets me up in the morning to go to work.”

 

Advice

What recommendations would you offer to teens and young adults trying to determine a career path?
“My number one recommendation is to be flexible and be realistic. The life you picture for yourself at 16 is probably not going to be the life you have when you’re 30. It can be bitterly disappointing to have to change your plans because of something beyond your control. It doesn’t mean you shouldn’t try to attain your dreams, but it does mean you should be ready to reach for a new dream. I didn’t picture my life as it is when I was 16. But I love my job, I’m a newlywed, I have a very spoiled puppy and kitty at home, and I am surrounded by amazing, supportive people that I never would have met without getting sick. It makes things more difficult, yes, but it’s also opened doors that I wouldn’t have seen otherwise.

Other than that, find something that makes you happy, if you can. Oh, and health insurance. That’s a good thing to look for in a job. You’re not thinking of it now (hopefully), but you’ll need it sooner than you’d wish, trust me.”

 

Find Out More

The Arthritis Foundation has many resources  to help teens and young adults with JA enter the workforce, whether it’s the career decision making process, resources for college or technical school, adaptations to consider in the school or work environment or any other related issue. Contact the Arthritis Foundation to find out more about these resources.

 

  


 

  

Jingle for JA!

Local kids and teens with juvenile arthritis lead the charge at Jingle Bell Run/Walk events. Read their inspirational stories!


The season of Jingle Bell Run/Walks is here! These festive, fun, family-friendly 5K events take part across the Arthritis Foundation, Great West Region. Each event is designed for the whole family and has games for kids as well as youth fun runs. Funds raised support the Arthritis Foundation in its mission for better research, programs and awareness of diseases like juvenile arthritis.

Participating in the Jingle Bell Run/Walk gives children with JA a chance to feel special and supported, but it also empowers their parents, siblings and whole community to feel like they can take action against arthritis, too.  

“We hear so many great stories of families that form a Jingle Bell Run/Walk team and then use it as an opportunity to educate their child with JA’s friends, teachers and classmates about juvenile arthritis,” says Kelsey Birnbaum, Vice President of Development at the Arthritis Foundation, Great West Region. “Instead of making the child with arthritis feel different, it can actually help them feel more accepted by giving their classmates a chance to join their team, come to the event, make team costumes or T-shirts and have lots and lots of fun.”

The Great West Region has an incredible group of youth honorees for this year’s Jingle Bell Run/Walks. Each of these phenomenal kids and teens have great stories to share about growing up with juvenile arthritis, overcoming obstacles and getting their community involved in their Jingle Bell Run/Walk.

Find out more about them!

 

  

Allison, Age 11
JIA
Read more about Allison's story

Anna, Age 16
JRA
Read more about Anna's story

  

Dalton, Age 11
JIA / Still's Disease
Read more about Dalton's story

Ellen, Age 21
Polyarticular JRA
Read more about Ellen's story

   

  

Jojo, Age 5
Polyarticular JIA
Read more about Jojo's story

Nicholas, Age 7
Polyarticular JIA
Read more about Nicholas's story

 

Paige, Age 12
Polyarticular JIA
Read more about Paige's story

 

Tyler, Age 6
Polyarticular JIA
Read more about Tyler's story

Zach, Age 13
JRA
Read more about Zach's story

 

 

 

 

 

Oral vs. Injected Methotrexate in Kids

By Alice Goodman / Reprinted from ArthritisToday.org

 

A new analysis suggest they may be equally effective in juvenile idiopathic arthritis.  

It may be just as safe and effective to treat children with juvenile idiopathic arthritis, or JIA, using oral methotrexate as it is to give them injectable methotrexate, according to a retrospective analysis of a Germany database. But the authors of the study caution that a randomized, clinical trial is needed to compare these two routes of administration before either one can be established as superior. The study was recently published online in Arthritis Care & Research.

Methotrexate is a cornerstone of treatment for JIA, a term used to describe several different categories of arthritis in children less than the age of 16 years. “The question of how to start treatment with methotrexate in children with JIA – orally or via subcutaneous injections – is of great importance. There is no common consensus,” says lead author Ariane Klein, MD, Askelapios Klinik in Sankt Augustin, Germany.

The study notes that methotrexate injections tend to have better response rates than oral methotrexate in adults with rheumatoid arthritis, or RA. But the authors write that injections may be especially painful for pediatric patients. This can “pose a significant burden for the patients and their families, and result in more consultations with physicians and health professionals if parents feel unable to give the injections themselves,” says Dr. Klein.

In the United States, injectable methotrexate is often given to JIA patients at the start of treatment to achieve maximum effects, and once the disease is brought under control, the patient is switched to oral methotrexate, according to pediatric rheumatologist Carol Wallace, MD. Dr. Wallace is past chair of CARRA – the Childhood Arthritis and Rheumatology Research Alliance – professor and division chief of rheumatology at the University of Washington Seattle Children’s Hospital, and has authored several studies on methotrexate use in JIA.

The retrospective analysis was based on data from the German Methotrexate Registry, which was started in 2005. The study group included 411 children with JIA (average disease duration about one year) who were newly treated with either oral methotrexate (259 patients) or injectable methotrexate (152 patients) for at least six months. The method of methotrexate delivery was not assigned randomly; it was chosen by each child’s doctor.

Children taking injectable methotrexate had more severe disease activity when they entered the study than those in the oral group. Despite this difference, patients in both groups got a similar dose of methotrexate, about 0.4 mg/kg.

Both oral and injections of methotrexate were similarly effective, with 73 percent of the oral group and 72 percent of the injectable group achieving at least a 30 percent improvement in signs and symptoms of JIA after 6 months of treatment. A similar percentage of patients in both groups achieved a 50 percent and a 70 percent improvement in signs and symptoms of disease at 6 months.

Safety data showed that 22 percent of the oral group and 27 percent of subcutaneous group experienced at least one documented side effect (including gastrointestinal symptoms, infectious events, fatigue, blood abnormalities, uveitis). But significantly more injection patients (11 percent) discontinued methotrexate due to side effects than patients taking oral methotrexate (5 percent).

Folic acid supplementation, which is used to prevent side effects of methotrexate – such as gastrointestinal distress and elevation of liver enzymes – was given to 46 percent of the oral group and only to 32 percent of the injectable group. (Dr. Wallace notes that in the US, folic acid is typically given to all patients on methotrexate.) But there were no difference in the frequency of discontinuation in those patients who did and did not receive folic acid.

Dr.Wallace calls this study provocative and interesting – but interprets the results of this report cautiously. “Registry studies may have missing data that can be a potential problem,” she says, pointing out that the study’s safety data are difficult to interpret, details on corticosteroid use (oral and injected) was not provided, and whether patients were on nonsteroidal anti-inflammatory drugs, or NSAIDs, when they experienced an adverse event was not reported. Many of the side effects attributed to methotrexate may also occur with NSAIDs, she says.

She, like the study authors, says that a clinical trial comparing the two different routes of methotrexate administration in JIA patients would be “incredibly helpful.”

And Dr. Wallace – whose research has focused on early and aggressive treatment for JIA, including the use of a biologic in addition to methotrexate – says she would be interested in a follow up of this group of patients. “Treatment of JIA is an evolving area. It would be interesting to know how many patients from this 2005 to 2009 cohort continued on methotrexate alone after six months with achieving inactive disease,” she says. “Currently, most patients would be started on methotrexate earlier in [the course of the] disease than the average disease duration of 1 year in this report. Earlier treatment may provide different efficacy between the routes of treatment.”

 

 

 


 

  

Juvenile Arthritis and Sleep

Why Going to Bed Early May Not Be Enough

 

We all know that a good night’s sleep is important to functioning at our very best. That’s why we hit the sack early on the night before a job interview or send our kids to bed early before a big exam at school.

We do these things for good reason. From experience, we know that our kids feel and perform at their very best when they are well rested. Research also confirms that “adequate and good-quality sleep is essential for normal growth and development and health outcomes in school-age children” (A).

Since good, uninterrupted sleep is essential for the health and well-being of kids and teens, what happens when our children don’t get the rest they need? According to research, when children don’t receive adequate rest, they can become inattentive and hyperactive which are common symptoms of ADHD. Poor sleep can also be associated with “behavioral problems, memory problems, poor school performance, daytime sleepiness, fatigue,  increased school absenteeism, slower growth and lower quality of life” (A, B, C).

While it seems that a simple fix for this problem might include sending our kids to bed at a reasonable hour, going to bed early may not be the answer for every child. Recent research suggests that kids with Juvenile Arthritis may actually have a higher prevalence of “disturbed sleep” than their healthy classmates. Disturbed sleep can be caused by sleep disorders such as snoring and sleep apnea, or poor sleep habits (A, B).  Symptoms of disturbed sleep include snoring, pauses during breathing, restlessness (i.e., kicking, thrashing), night sweats, and daytime sleepiness during school or after school (i.e. napping).  Disturbed sleep makes it nearly impossible for a child to feel well-rested when they wake up in the morning, regardless of the time they went to bed.

Since sleep disorders are often overlooked in clinical care, a clinician may attribute a child’s missed school days or lower quality of life exclusively to JIA related symptoms when the a sleep disorder could be a major contributing factor (A). Simply being aware of this possibility can help parents and caregivers have better conversations with their child’s doctor and raise questions about the impact of sleep on their child’s health. Parents and caregivers should work jointly with their child and their child’s doctor to discuss any existing sleep problems and explore treatment options with a licensed medical care provider.

If you and your child with JIA want to learn more and contribute to research on sleep and JIA, consider becoming involved in a sleep research study in your local community. Contact the Arthritis Foundation to learn about research studies near you.



Reference (A): Ward TM, Ringold S, Metz J, Archbold KA, Lentz, MJ, Wallace CA, & Landis CA. (2011). Sleep disturbances and neurobehavioral function in children with and without Juvenile Idiopathic Arthritis.  Arthritis Care & Research, 63(7),1006-12.

Reference (B): Ward TM, Archbold KA, Lentz, MJ, Ringold S, Wallace CA, & Landis CA. (2010). Sleep disturbance, daytime sleepiness and neurocognitive performance in children with Juvenile Idiopathic Arthritis. Sleep, 33(2), 252-59.


Reference (C): Ringold S, Ward TM, & Wallace CA. (2012). Predictors of Fatigue in Juvenile Idiopathic Arthritis.  Arthritis Care & Research. [Epub ahead of print].

 

  


 

 

Photo Postcards From Across the Region



 

Five year-old Maggie Barrett can’t wait for the day she’s allowed in the Teen Lounge at KAT-FISH Camp!

 

Have your own JA photo postcard?
Submit it to wbalmer@arthritis.org

 

 

 

 

 

 

 

 


 

 

 Community Connections

 

 

 

 

 

Find upcoming Arthritis Foundation juvenile arthritis programs in your area.

  

 


 

 

Get Connected

Find your local Arthritis Foundation office to get connected to programs, events and volunteer opportunities.

Feedback or ideas for AFamilies future content? E-mail wbalmer@arthritis.org

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