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News for kids and young adults affected by juvenile arthritis and their families
Fall 2013

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Articles This Issue

Systemic JIA May Soon Get Fourth Biologic
Rilonacept found to be effective against this serious form of juvenile arthritis. Read more.

'Tis the Season to Give Thanks
Families share what they are thankful for in the lives of their child with juvenile arthritis. Learn more. 

Keeping Kids Engaged: Car Rides, Waiting Rooms and Infusions, Oh My!
How do you keep your child’s mind OFF his disease or upcoming treatment and engaged in a positive activity while you’re… waiting? Check out ideas from parents of kids with JA.

Growing up with JA: Tales of Transition
Learn about Taylor Bruce’s experience growing up with arthritis. Read her story.

Jingle for JA
Local kids and teens with juvenile arthritis lead the charge at Jingle Bell Run/Walk events. Discover how. 

Save the Date for 2014 JA Camps
Mark your calendar and plan to join us for education, fun and networking in 2014! Find your event.   

Great West Region to Host 2014 National JA Conference
Hundreds of JA families will gather for the 2014 National Juvenile Arthritis Conference in Keystone, Colorado. Save the Date!

The Importance of Health Insurance Marketplaces
Learn ways to navigate the new online health insurance marketplaces to get the benefits your family needs. Discover more.

Photo Postcards

Community Connections

Connect with Us

 

 


 

Systemic JIA May Soon Get Fourth Biologic

Rilonacept found to be effective against this serious form of juvenile arthritis.

By Marianne Wait / Reprinted from ArthritisToday.org


rilonaceptThe biologic drug rilonacept (Arcalyst) is an effective and relatively safe treatment for systemic juvenile idiopathic arthritis (sJIA), a rare but especially serious form of arthritis in children, according to a study presented at the recent American College of Rheumatology’s annual meeting in San Diego.


Roughly 10 percent of children with juvenile idiopathic arthritis (JIA) have the systemic form, which can involve not only joint pain and swelling but also a high daily fever, a rash and anemia. Because sJIA can also cause inflammation of internal organs – including the spleen, heart, and brain – it’s a serious condition that requires aggressive treatment.

Treatment for sJIA varies depending on how severe it is (the American College of Rheumatology released new treatment guidelines in October). A non-steroidal anti-inflammatory drug (NSAID), such as ibuprofen may be tried, but if it doesn’t work well enough (which is often the case), doctors move on to disease-modifying antirheumatic drugs (DMARDs) such as methotrexate or lefunomide, or on to a biologic.

The first biologics developed for rheumatic conditions – so-called TNF inhibitors like etanercept (Enbrel) and adalimumab (Humira) – do not work particularly well on children with sJIA (compared to those with other forms of JIA). But the more recent approval of biologics that work via other chemical pathways have shown much more promise in controlling it.

In this phase 3 study – typically the last stage of a clinical trial before a drug is approved by the FDA – the researchers randomly assigned 71 children with sJIA to receive weekly injections of rilonacept for 24 weeks or four weeks of placebo injections followed by weekly injections of rilonacept for 20 weeks. Neither the researchers nor the patients knew who was receiving a placebo. A number of patients continued the drug after 24 weeks, for as long as 21 months. Participants were drawn from the Childhood Arthritis & Rheumatology Research Alliance (CARRA) – a network of pediatric rheumatology research centers across North America – which is supported in part by Arthritis Foundation research funding.

“Rilonacept was found to be effective and generally well tolerated in treating systemic JIA patients,” says lead study author Norman T. Ilowite, MD, division chief of rheumatology at Children’s Hospital at Montefiore Medical Center, in New York City.

Children who started on rilonacept from the get-go saw improvement two weeks sooner, on average, than those who started it later. At week four, 79 percent of patients in the rilonacept group showed at least a 30 percent improvement compared to 39 percent in the placebo group; 40 percent of the rilonacept group saw at least a 70 percent improvement at week four compared with 12 percent in the placebo group.

The drug was effective in patients both with and without systemic symptoms such as fever, says Dr. Ilowite, who is also a professor of pediatrics at Albert Einstein College of Medicine, in New York City.

 

 

 

 


 

'Tis the Season of Giving Thanks

Families share what they are thankful for in the lives of their child with juvenile arthritis. 

 

bridgeAll of us here at the Arthritis Foundation, Great West Region are thankful for YOU! Your family’s perseverance through good days and bad days, your support for one another, your dedication to forming a strong JA community, and your determination to fight for a cure for arthritis inspire us each and every day. To our JA family and friends—THANK YOU!

This holiday season, we’re asking our JA families to share with us what they are thankful for in the lives of their child with juvenile arthritis. We appreciate those of you who have shared with us via the Juvenile Arthritis Conference Facebook page, and we look forward to hearing more “good news”!

  • My daughter’s perseverance and her smiles…through the pain
  • My son’s spirit to keep moving
  • More good days and less rough ones
  • An amazing school, teachers and classmates who rally around my daughter…
  • My daughter’s amazing strength through her last joint operations and her smiles through the pain
  • My son’s first round of injections working and him getting mobility back in his wrist!
  • Medicine in general!!!
  • Other who understand JIA, and my daughter’s bravery
  • For the friends that my daughter made at the JA Conference
  • Remission!
  • Our daughter’s strength and determination!
  • The character this disease has created in my daughter
  • The love and support of friends and family
  • Un-medicated remission for 5 years!!!
  • …all the love and support given to my child with JA
  • The will power, strength and determination both my daughters with JA have, the way they help each other battle to stay strong and get through every hurdle life throws them. And mainly how one child with JA will set everything aside to battle for her sister with JA….
  • My daughter’s wonderful attitude and sense of humor. It really gets us all through the ups and downs.
  • That my daughter is walking after several years of not being able to straighten her legs.
  • Medication. Before my son started his latest treatment he was a very sick little boy. This new medication has changed his life, and he is now a vibrant, active six-year-old!
  • The JA community
  • Pain free days
  • The Arthritis Foundation


(Names removed to protect privacy.)

 

 


 

Keeping Kids Engaged: Car Rides, Waiting Rooms and Infusions, Oh My!

How do you keep your child’s mind OFF his disease or upcoming treatment and engaged in a positive activity while you’re… waiting? 

 

girl waitingWe often hear from families that a difficult part of treatment for kids with arthritis is the…waiting. Long periods of waiting can cause stress and anxiety in both children and adults who care for them. Whether they are waiting to be seen in a doctor’s office, killing time during a long car ride to the clinic, or counting down the hours until their infusion is finished, kids with arthritis (and their parents) tend to have a lot of time on their hands. We heard from a few parents who shared how their family passes time…

Activity Pack. To keep their kids engaged and their minds off of arthritis during long periods of waiting, the Barrett family from Everett, Washington, keeps a backpack full of activities specifically for doctor appointments. The kids are not allowed to use the backpack except on appointment days, so that the contents are always exciting. Heidi Barett (the mom of a child with juvenile arthritis), says, “In the backpack, we keep markers, pens, color crayons and coloring books. We keep small travel games that are made for the car, like chess and checkers. When the kids were little we had the travel version of Hi Ho Cherry O. We also keep cards in the bag. The older boys love to play cards while we wait.”

Technology. Many parents also use technology to keep their kids engaged and focused on something positive during long periods of waiting. JA Dad, Nick Steen, says allowing his daughter to use a tablet keeps her mind off of her upcoming appointment. Mobile phone apps can serve the same purpose and many fun, interactive, and educational apps are free to download. Camp JAM volunteer, Cyrena Chih, designs mobile apps for a company called Duck Duck Moose. Their company works with educators in classrooms and kids of all ages and levels to test their apps to ensure they are frustration free for little fingers and full of whimsy and wonder that all kids enjoy. Cyrena and others at her company have created 18 award-winning apps ranging from nursery rhymes, creative play to curriculum-based apps…one of many fun options to explore while passing the time in a doctor’s office.

FREE GIVEAWAY!
For a chance to get a free educational Duck Duck Moose app for your child,
go to http://www.duckduckmoose.com/ and select your top three favorite apps.
Then, email love@duckduckmoose.com with your choices.

Books. Sitting down with a good book is also a popular choice to pass the time among parents and kids alike. Barrett tells us, “Instead of carrying a million books with us, we just take the [e-reader] (which is a must have in my book, pun intended!). The great thing about [our e-reader] is downloading tons and tons of free books from little children to adult. They also have lots interactive books that are fun while you are waiting.”

Arts & Crafts. If your child enjoys crafts, you may also want to consider taking along knitting, needle work, or the latest arts and craft trend such as a rubber band bracelet making kit. Browsing inspirational websites and pin boards can also help you come up with fun and easy craft ideas to do on the go. Arts and crafts need not be labor intensive to make them fun. In fact, some of the most popular ideas are often the simplest. Take a notepad and markers and let your child’s imagination do the work!

Homework. Another good use of time during medical appointments is getting a head start on homework. If your child has to miss school for a medical appointment, requesting homework in advance can help your child stay caught up with their studies. Completing homework while waiting for a doctor’s appointment or during a long car ride will also allow your child to head to bed early when you get home. Fatigue is not uncommon after an infusion or injection, and having homework done early will allow your child to get their much needed rest after an appointment.

Write a Letter or Make a Call. Encouraging kids to write an old fashioned letter or make a phone call to a friend, a grandparent, a teacher, or your state’s representative in congress to tell them about arthritis is a good way to turn “wasted time” into purposeful action. Regardless of the recipient, sharing about arthritis and how it impacts your family can be a cathartic experience for kids and parents alike. Raising awareness can also positively impact the lives of kids and teens with arthritis. The Housh family, members of the Arthritis Foundation’s grassroots advocacy program, recently spoke with their congressional representative and received a friendly email back stating that because of their interaction, he would co-sponsor legislation that helps kids with arthritis! 

Games. Playing family-friendly games is another way to keep kids (and parents) engaged while waiting. A simple game of tic-tac-toe or a longer board game can be the perfect solution for passing the time. The Barrett family takes dry erase markers to their doctor appointments because each room at the hospital has a white board. Barrett says, “One of our favorite things to do while we wait is to play hangman on the white board. We play a pretty competitive game of hangman.”

Regardless of the activity you choose, having a plan in place to pass the time will help your family better cope with the long periods of waiting that often accompanies treatment for juvenile arthritis.

 

 


 

Growing up with JA:
Tales of Transition

Learn about Taylor Bruce’s experience growing up with arthritis. 

 

Bruce

Taylor Bruce
Tacoma, WA

Diagnosed with polyarticular rheumatoid arthritis at the age of 18 months

Currently 15 years old

 

  

Diagnosis Story
I was diagnosed with poly-articular rheumatoid arthritis at the age of 18 months. I am currently 15. My mom noticed that I was walking funny. I had reverted back to crawling to get around and my daycare noticed I was saying "owie" a lot. My mom took me into my pediatrician who did blood work, an exam, and x-rays. At first, they thought it was a knee infection and admitted me into the hospital to be put on IV antibiotics. They told my mom that I might lose my knee permanently if we didn't do the antibiotics. I was hospitalized three days when they realized it was not an infection. Two months later, they sent us up to Children's Hospital where I received my diagnosis. I was so little that I don't remember when I was diagnosed and how I felt. At first it was only in my right knee and both ankles, but gradually spread to my left knee, left pinky, both wrists, and right jaw in addition to the other joints. My jaw has been the most damaged and I will have to have surgery on it this summer.

What are some of the biggest challenges you’ve had because of your arthritis?
Some of the biggest challenges I've had because of my arthritis is getting over my self-consciousness. As a child having arthritis, it’s hard to understand sometimes why you have to go to the doctor so much more often than regular kids. I didn't fully understand and I thought it made me different and irregular. I wanted to fit in, but couldn't always do the same stuff kids my age could do. That made me mad because quoteI am a very competitive person and I didn't want my arthritis to stop me from winning against the boys or showing everyone what I could do.

I also didn't want other people's pity. Whenever I met someone new and they found out about my arthritis, I could see the change that happened in their eyes. They saw me as someone to protect and feel sorry for, but I didn't like that. I wanted people to see me, all of me, and not have their opinion of me clouded by the thought that I can't do the same stuff as them. I also didn't like it when others limited me. I know the way my body works, I know when I need to stop and I hated that they continued to tell me that "no, you shouldn't do that, it wouldn't be good for your arthritis" when my body felt just fine and I knew I could stand it.

I also had to get used to talking to people about it and public speaking from a young age. I talked to congressmen and senators in Washington D.C., was the honoree for the Jingle Bell Run/Walk, helped Dr. Emery by being her assistant while teaching medical students, talked at Rheumapalooza (a college course for medical students interested in Rheumatology), participated in multiple studies and helped my mom with the KAT Auction (an event to raise money for the Arthritis Foundation). I wasn't ever really given the option to be shy because I wanted to help the best I could with raising money, awareness, and finding a cure for arthritis.

How did you first get connected with the Arthritis Foundation?
My mom saw a commercial for an Arthritis Walk on TV. Ever since then, we have been involved with the Arthritis Foundation and its efforts in raising money and awareness. We've been involved in the Jingle Bell Run/Walk, Tacoma Arthritis Walk, KAT-FISH Camp, and founded the KAT Auction.

What are some of the ways that the Arthritis Foundation has supported you?
The Arthritis Foundation has supported me by having KAT-FISH Camp where I can talk to kids my age and understand that I'm not alone. The camp is really cool because it's not weird for you to take medications, or not participate in certain activities. No one judges you there and everyone understands your position and pain. I have made life-long friends through camp.

What are you most nervous about and what are you most excited for in your future?
I am nervous about college. I am a freshman in high school right now but the school I attend is already trying to prepare us for college and all I can think of is “not now! I'm only a freshman!” It was a big transition moving from middle school to high school but I was supported by my parents and friends. I'm anxious about the thought of college because I'm afraid I won't have that support and I’ll have to start all over again.quote

I am most excited about finishing my schooling and becoming a doctor. I don't know exactly what type, but I do know I want to be in the medical field. I think it might be cool to become a surgeon or rheumatologist. I believe I would be good being a rheumatologist because I would be empathetic to the patient with their situation seeing as I've gone through it, too.

How does the perspective you have gained from having arthritis influence or motivate you?
The perspective I've gained is to not make assumptions right off the bat. I don't want to judge someone or assume someone's abilities because they know their own limitations. I also want to have every kid feel "normal" no matter what their difference is. Everyone should feel comfortable in their own skin and know that there are others out there to support them.

What are your strategies for managing arthritis, both physically and mentally?
For managing my arthritis physically, I like to stay active. I did dance, volleyball, and regular physical activity. I also take my medications. There was a period of time when I decided not to take my meds and hid them from my parents. They eventually found my stash and I suffered a lot of pain as my arthritis became active again by not taking my meds regularly. It's so important to take them because it always turns out bad when you don't.

For managing it mentally I had to take the meds that made me sick. Whenever I had to inject myself with one of my medications, once a week, I dreaded it because it would make me sick to my stomach. The terrible nausea went away after 12 or so hours but made me feel like I was going to vomit. The injection is yellow and the color of Mountain Dew. To this day I still can't drink Mountain Dew without gagging at the thought of the nausea.

How have you prepared yourself for the transition to college and also the transition to start seeing an adult rheumatologist?
When I transitioned into high school it was a little difficult with the homework load and missing school because of appointments. I also get sick easily because of a low immune system due to the medications I take, so I get sick often (three times this fall alone). I am beginning to get the hang of it and feel more comfortable.

As for the transition to start seeing an adult rheumatologist, we have been asking some older KAT members (kids and teens with arthritis) we know who now see adult doctors to give us advice in helping us find one.

What do you feel are some of the biggest challenges that teens with JA face?
I think the biggest challenge is feeling comfortable in your own skin. It’s hard enough being a teen in this day and age with social media and trying to fit in but as a kid with JA it can be almost twice as difficult. We not only have to survive high school and middle school, we also have to deal with missing school and being okay with not always being able to do everything others can do.

What recommendations would you offer to children or teens that have been just diagnosed?
To kids that have just been diagnosed I just have to say don't always worry about fitting in; stand out. You don't have to worry about what everyone will think of you if you can't necessarily do the same thing they do. Trust the people you know who will stick with you through this because you need a support system and the first step is being comfortable with yourself and not always conforming to society's definition of "normal."


Find out more:
Read the stories of other teens and young adults, like Taylor, who are affected by arthritis.

 

 


 

Jingle for JA

Local kids and teens with juvenile arthritis lead the charge at Jingle Bell Run/Walk events.

 

JBRWThe season of Jingle Bell Run/Walks is here! These festive, fun, family-friendly 5K events take place 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 to provide 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 Andrea Aho, Regional Manager, Juvenile Arthritis 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!

 

Bella

Bella, Age 12
Reflex Neurovascular Dystrophy
Read Bella's story

 

Danielle

Danielle, Age 13
Pauciarticulr JRA
Read Danielle's story

 

Tatum

Tatum, Age 10 
Pauciarticular JRA
Read Tatum's story

 

 Alissa

Alissa, Age 2
Juvenile Idiopathic Arthritis
Read Alissa's story

   

  Lucy

Lucy, Age 8
Juvenile Rheumatoid
Arthritis
Read Lucy's story

 

Alex

Alex, Age 6
Juvenile Rheumatoid Arthritis
Read Alex's story

 NeKai

NeKai, Age 9
Juvenile Rheumatoid
Arthritis
Read NeKai's story

 

Audrey

Audrey, Age 22
Juvenile Rheumatoid Arthritis
Read Audrey's story

Camryn

Camryn, Age 6
Polyarticular Juvenile Idiopathic Arthritis & Uveitis
Read Camryn's story

Erica

Erica, Age 12
Juvenile Arthritis 
Read Erica's story

 

Find out more: 

Learn about the local Jingle Bell Run/Walk in your community.

 

 


 

Save the Date for 2014 JA Camps

Mark your calendar and plan to join us for education, fun and networking in 2014!  

camp collage

 

JA Camps exist to provide education, networking and fun for kids and teens with arthritis, and in some cases, for the whole family. Campers take part in activities designed to help them increase self-confidence, improve arthritis self-management, and develop leadership and communication skills all while making new friends who share similar challenges. At our family camps, parents/caregivers and siblings get to join in the fun too!

 

Visit the JA Camp Event Pages to learn more about each program and email us to receive a notice when registration opens.

 

 

 


 

Great West Region to Host 2014 National JA Conference

 

KeystoneSave the Date for the 2014 National JA Conference!
July 3 - 6, 2014
Keystone, Colorado

The 2014 National JA Conference will be hosted by the Great West Region - that's us - in Keystone, Colorado, July 3-6, 2014. Please join us for an unforgettable adventure in the gorgeous mountains of Colorado to celebrate the 30th anniversary of the JA Conference and to honor all the kids, teens and young adults who live with arthritis!

Watch the 2014 JA Conference teaser video, and stay tuned to the National JA Conference Facebook page for ongoing updates.

 

JA conference promo

 

 

 

 

 


 

The Importance of Health Insurance Marketplaces

Learn ways to navigate the new online health insurance marketplaces to get the benefits your family needs. 

Having health insurance protects you and your family from large medical bills and helps you stay healthy. However, many Americans have been shut out of health insurance due to existing health conditions, such as arthritis, or the high cost of insurance. This leaves many people uninsured.

Beginning next year, most Americans will be required to carry health insurance. Starting October 1, 2013, people without health insurance can sign up for coverage through new health-insurance marketplaces run either by their state, the federal government or a combination of both. This offering is the centerpiece of the Affordable Care Act (ACA), passed into law in 2010. If you do not have insurance by March 31, 2014, you may be charged a fee.

marketplacesSelecting health insurance can be a complicated decision, particularly for first time purchasers. The Arthritis Foundation is here to provide the resources you need to understand your coverage and benefits options so you can make a better-informed decision about your insurance options.

The Arthritis Foundation recently launched a Marketplace Toolkit, designed for individuals who do not currently have health insurance. The Arthritis Foundation Marketplace Toolkit has information and tools to help you understand your options and help you make the right decision.

Even if you have health insurance through an employer, Medicare, or Medicaid, this toolkit can still be a great resource to you. Many of the tools can help you learn more about the health insurance you already have. Other tools will be more helpful to people shopping for new insurance in the Marketplace.

Choosing insurance can be confusing, especially with the factors related to arthritis. Individuals with arthritis have to look at plans to make sure certain medicines, devices and surgeries are included. You may need coverage for joint replacement. You may need biologics. You may need physical therapy. When you choose a plan, you must consider many of these things.

The Arthritis Foundation is here to provide the resources you need to understand your coverage and benefits options so you can make a better informed decision about your insurance options.

To learn more about the Arthritis Foundation Marketplace Toolkit, visit www.arthritis.org/marketplace.

 

 

 

 


 

Photo Postcards from Across the Region

 

 Kylie, a camper from Camp Milagros, has this perspective to share:

postcard


“Camp Milagros really makes you feel at home. You know that everybody here can go through the pain that you have. There’s about 50 kids here, and I know that they’re going through the same exact same thing as me. We’re all on a big journey, and some people have some nice and light backpacks, and then there’s the people with the heavy backpacks – lunging and they will always be late. Everybody with arthritis has got a heavy backpack. You kids with the heavy backpack – lighten it up and come here and be happy.”

 

Watch this year’s Camp Milagros video.

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

  

 

 

 


 

 Community Connections

 
 community connections

Find upcoming Arthritis Foundation juvenile arthritis programs in your area, resources, books, brochures and ways to connect with other families. Learn more.

  


 

 KGAT

Connect with Us!

Contact Andrea Aho for more information about JA programs and services throughout the Arthritis Foundation, Great West Region.

Andrea Aho
aaho@arthritis.org
888.391.9389 / Option 7 / Ext. 101

 

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