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

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Articles This Issue

Common Children's Vaccine Okay in Juvenile Arthritis
The MMR booster does not worsen symptoms in kids with JIA. Learn more.

Back to School Shopping: Are Accommodations on Your List?
504 and IEP plans are just a few of the vital things to consider when getting ready for the new school year.  Discover more. 

Connecting at Camp and Staying Involved
Your local JA Camp may be over, but that doesn't mean the magic of camp has to end.  Find out ways to stay connected. 

Growing up with JA: Tales of Transition
Learn more about Madison Thomas' perspective of "Having arthritis does not mean I will not be able to do what I want to do; it just means that I will have to work harder at it than other people."  Read her story.

The All New KidsGetArthritisToo.org
A new website for kids, teens and parents affected by JA offers fresh and valuable information.  See it now.

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!

Register Now for a JA Family Program Near You!
A series of fall events offer JA education, new friends and helpful resources for the whole family.  Find your event.    

Photo Postcards

Community Connections

Connect with Us

 

 


 

Common Children's Vaccine Okay in Juvenile Arthritis

The MMR booster does not worsen symptoms in kids with JIA.

By Jennifer Davis / Reprinted from ArthritisToday.org

 

vaccine shotNew research shows that the measles-mumps-rubella (MMR) booster vaccine works well in patients with juvenile idiopathic arthritis (JIA), and does not cause flares or otherwise worsen their disease, according study published recently in the Journal of the American Medical Association.

Traditionally, JIA patients – who are immunosuppressed due to their disease and/or medication, such as methotrexate or biologics – have been warned against getting vaccines that contain a live virus, such as this one, out of concern they could get sick with the disease the vaccine is supposed to prevent. Furthermore, the safety has been questioned because small, uncontrolled studies have raised questions about whether the rubella component induces arthritis, although controlled trials have failed to establish this association.

“Our trial unequivocally shows that MMR booster vaccination has no effect on JIA disease activity,” explains lead author Marloes W. Heijstek MD, in the department of pediatric immunology at Wilhelmina Children’s Hospital in Utrecht, the Netherlands. “JIA is a relapsing and remitting disease. The fact that a flare occurs after a vaccination does not necessarily mean that there is a causal relation between the flare and the vaccination. Our randomized controlled design enabled us to show that these flares after vaccination are coincidental…rather than causal.”

For the study, researchers recruited 137 JIA patients between the ages of four and nine who were on various different treatments including methotrexate (60 children), a biologic (15 children) and/or nonsteroidal anti-inflammatory drugs (74 children). Half of the children were randomly assigned to receive the MMR booster; the other half did not receive the booster and served as the control group. Patients were assessed every three months for a year.

After a year, children who had received the MMR booster had higher protection rates – as measured by blood concentrations of certain antibodies – against measles, mumps and rubella (97 to 100 percent) compared to those who had not (81 to 94 percent). Average disease activity scores – as measured by the Juvenile Arthritis Disease Activity Score including 27 joints (JADAS-27) – were virtually the same between the two groups.

Because the number of patients using biologic drugs was so small, the researchers can’t say for certain the MMR booster is safe for them, even though the results lean in that direction. “This needs to be studied in larger patient cohorts,” Dr. Heijstek says.

The researchers write that they were also unable to draw firm conclusions about the effect of the MMR booster on JIA patients with high disease activity, since the majority of the patients in the study had low disease activity.

These results apply only to the MMR booster vaccine, which is generally given to children between the ages of four and six – not the primary MMR vaccine. However, the researchers say primary MMR vaccinations are not generally a concern for JIA patients because the vaccine is typically given during the first year of life, before the onset of JIA, which in the large majority of patients occurs after the age of two.

Daniel J. Lovell, MD, the associate director of the division of rheumatology at Cincinnati Children's Hospital Medical Center, in Ohio, notes that this study confirms the results of two earlier studies – and says it is important to see data accumulating on the effects of live vaccines in JIA patients.

“This is good news. It’s important information and I think based on the fact we now have three studies that all demonstrate the same thing, I would move forward and tell parents it is safe to do the MMR booster in children on methotrexate,” Dr. Lovell says. “I think it is encouraging news for patients taking biologics – but additional studies need to be done to confirm this for them.”

Dr. Lovell says it is important to stress that inactive vaccines are safe in all JIA patients, since the viruses are not live.

 

 


 

Back to School Shopping: Are Accommodations on Your List?

504 and IEP plans are just a few of the vital things to consider when getting ready for the new school year.  

 

chalkboardIf you’re like most families, the back-to-school season just snuck up on you. Suddenly, the lazy days of summer have been interrupted by the hunt for the perfect backpack and the never-ending “must have” school supply lists.

Does this sound familiar?
5 Binders?…check. 29 Pencils?…check. 85 boxes of tissue?…check. Accommodations, 504 plan or IEP?…uh oh. What?!

You’re not alone if the last items didn’t quite make your checklist. Many parents and caregivers worry that arthritis will impact their child’s ability to perform well and participate fully in the upcoming school year, but seeking out accommodations can feel like an overwhelming task during the already hectic, back-to-school season.

You may have heard the terms “504 plan” or “IEP” from your child’s rheumatologist or a speaker at an Arthritis Foundation camp, but it’s possible that you still have questions about what it all means and what accommodations your child might benefit from, or even be eligible for, in the school setting.

To help answer your questions, the Arthritis Foundation, Heartland Region partnered with Dr. Peter Chira from Riley Hospital in Indianapolis, Indiana to create a webinar about School and Juvenile Arthritis. Click here to access the webinar and learn more about:

  • Understanding those letters and numbers: 504 plan, ADA, IDEA, IEP
  • How to work with your physical education teacher
  • Teaching the teacher and class about JA

Once your initial questions are answered, it’s important to think about what accommodations might be necessary for your child considering their current health status and potential future flares. Tal Slemrod, prospective doctoral candidate at University of Washington in the area of Special Education, suggested to KAT-FISH Camp parents that the best way to help their child succeed in school is to observe their child’s daily struggles and begin talking with his/her doctor and school about possible accommodations, before they are ever even needed.

Kids and teens with arthritis may benefit from accommodations such as:

  • Two sets of books (one for school and one for home)
  • Moving classes closer together
  • Stretch periods
  • Rest at lunch period or another time
  • Extra time between classes
  • Use of an elevator
  • No grades for handwriting
  • No timed tests; use of oral tests
  • Use of computers
  • Physical and/or occupational therapy
  • Physical education geared to the student’s tolerance level (allow student to set own limits in physical education)

brochureAn important aspect of seeking accommodations for your child is to include them in the discussion and decision process. Your child may have ideas about what changes would be helpful and realistic in their school environment. They may also tell you what accommodations they are willing to accept—no child wants to stand out or look different from their peers. They are more likely to adhere to an accommodation plan if their input is sought along the way.

Regardless of the accommodations needed, the most important thing is to add a “plan for school accommodations” to your back-to-school checklist and initiate the discussion now.

For more ideas on getting the school year off to a great start, check out the Arthritis Foundation’s newest brochure, Juvenile Arthritis: A Teacher’s Guide. Order your free copy today and check out this website of educational resources. You can also print out this sample letter from your child to their teacher or school nurse.

 

 


 

Connecting at Camp and Staying Involved

Your local JA Camp may be over, but that doesn't mean the magic of camp has to end.

 

JA camp familyThe Arthritis Foundation, Great West Region’s summer camps bring together kids, teens (and in some cases, their families) to create lasting memories and to learn about arthritis. Campers enjoy traditional summer camp experiences like roasting marshmallows around a campfire, taking an afternoon swim, and meeting new friends.

The hallmark of an Arthritis Foundation camp is connecting with others who truly understand what it’s like to live with arthritis.

“KAT-FISH camper Aileen Barajas really captured the feelings of many of our families in the song she wrote and performed at camp,” says Robin Ruppert, KAT-FISH Camp Logistics Committee Chair.

Thanks to camp, I’ve found people like me.
We all know what it really means
To find others like us, makes us feel free… [listen to the full song here]
-Aileen Barajas, age 17

“Aileen has such a positive outlook - her song lyrics acknowledge the pain of arthritis but showcase her perseverance and ‘can do’ attitude. She really moved the audience and reminded us all why camp is so important to the kids and teens that we serve,” says Ruppert.

JA camper“Once camp is over, parents and kids tell us they can’t wait until next year when they can reconnect with their friends they made at camp,” says Cindy Bishop, Program Coordinator for the Arthritis Foundation, Great West Region. “We want to remind families that we offer programs and events all year long and they don’t have to wait until next year’s camp to see their friends again! Forming a team for the Jingle Bell Run/Walk or volunteering at the Arthritis Foundation office with friends from camp can be an amazing way to stay in touch with friends while also making difference in the community.”

We invite you to stay involved with the Arthritis Foundation year-round!

1. Join us at a Jingle Bell Run/Walk in your community.
The Jingle Bell Run/Walk is the perfect place to gather your friends and family and celebrate the season by giving! Wear a holiday themed costume and tie jingle bells to your shoelaces while you run or walk a 5K route with your team members or take part in the kids’ fun run. It’s a fun, family-friendly event to raise funds to fight arthritis, the nation's leading cause of disability…and we’d love for you to join us!

2. Become an Arthritis Advocate
Kids with arthritis and their families each have a unique story to tell that can raise awareness about juvenile arthritis and impact policy decisions on a local and national level. The Arthritis Foundation can teach families how to use their voice to educate government officials, school nurses, teachers, and health professionals about arthritis and its unacceptable impact. Learn more about our advocacy efforts today.

3. Volunteer through your local office
Volunteering as a family can be fun! It’s a great way to meet new people, build skills, socialize with other families and give back to the community. The Arthritis Foundation offers many opportunities for you to donate your time, skills and experiences to help serve the millions of people affected by arthritis.


Our final Arthritis Foundation camp of 2013 is right around the corner.
It’s not too late to register for Camp Limberlimbs in Gold Creek, Montana!

http://www.camplimberlimbs.kintera.org/

 

 


 

Growing up with JA: Tales of Transition

Madison Thomas' perspective is "Having arthritis does not mean I will not be able to do what I want to do; it just means that I will have to work harder at it than other people."  

 

Madison

 

Madison Thomas
Palo Alto, CA
Diagnosed with Polyarticular Juvenile Rheumatoid Arthritis at age 4
Currently 17 years old

 

 

Diagnosis Story
I don't remember being diagnosed because I was so young, but my arthritis started in my hands, more specifically my fingers. I feel pretty lucky that I was diagnosed correctly very early on and I know this was due to the fact that my mother has arthritis and was well aware of the symptoms. She recognized the pain of arthritis immediately during one incident when I sat at the dinner table, dropped my fork, and I started to scream.

I was originally diagnosed with Polyarticular Juvenile Rheumatoid Arthritis. Over the years, my arthritis has spread to my knees, back, wrists, elbows, shoulders - pretty much any joint you can think of, except my jaw. Now my pediatric rheumatologist has re-diagnosed me with Enthesitis-related arthritis. Because the diagnosis and the name of my disease seems to keep changing, I usually just explain it to other people by saying what type of arthritis I have, what joints are affected, and how my arthritis affects me.

What are some of the biggest challenges you’ve had because of your arthritis?
The biggest challenge for me is the medications, their side effects, and the constant switching from one medication to the next. When I was younger, I was on a medication that had a major side effect for me of deep depression. Thankfully I no longer take that medication, nor will I in the future. However, side effects differ from person to person, and medication to medication. I've also been on another medication that worked really well, but it caused severe inflammation of my gums to the point that my braces would poke into my gums. This challenge to find the right medication with minimal side effects is made more complex by the possibility that medication can become less effective over time.

How did you first get connected with the Arthritis Foundation?
My family has the genetic jackpot for autoimmune diseases. My mother, brother and I all have some form of JIA and other autoimmune diseases also. Back when I was diagnosed, it was rare for both siblings to have JA. Add in my mother’s arthritis and you can say that we are a one-of-a-kind family. The Arthritis Foundation was a HUGE help when I was younger and we have stayed connected with the organization for most of my life.

What are some of the ways that the Arthritis Foundation has supported you?
I remember going to the JA Conference in St. Paul, Minnesota when I was five or six and I had so much fun. I’ve made lifelong friends through JA programs and activities like the JA Conference and Camp Milagros. I also love going to the Teen Retreat in Northern California!

What are you most nervous about and what are you most excited for in your future?
I am nervous about transitioning from a pediatric rheumatologist to a new adult rheumatologist. If I could, I would keep seeing the doctor I have now because he understands me and he's one of my favorite doctors to see.

I am most excited about going to college next year.

How does the perspective you have gained from having arthritis influence or motivate you?
I know that I can do whatever I put my mind to. I want to be a surgeon when I get older, and I know that having arthritis will limit that. Having arthritis does not mean I will not be able to do what I want to do; it just means that I will have to work harder at it than other people.

What are your strategies for managing arthritis, both physically and mentally?
Making sure to take my medication and not forgetting is hard for me to do. I fix that by putting my medication in a place that I have to be in every morning and night. In the winter, I try to stay as warm as I possibly can. I also play softball and have noticed that being active has really helped my arthritis. Mentally, I know that my arthritis does not rule who I am as a person. I know that it has helped shape the person I am now, but it does not determine what I will do with my life.

How have you prepared yourself for the transition to college and also the transition to start seeing an adult rheumatologist?
In large part, my preparation for the transition to college is directly connected to my autoimmune diseases. Managing the physical pain and emotional challenges of arthritis has required me to mature more quickly, especially as I was diagnosed at a young age. I know what I want to do with my life and I want to start now. The transition to see an adult rheumatologist however will be harder for me because it's a new doctor and he or she will not know me or be familiar with my medical history.

What do you feel are some of the biggest challenges that teens with JA face?
Being a teenager with arthritis is hard. I was bullied my freshman year of high school because I had modified physical education class when my classmates did not. Explaining to teachers that you have arthritis and may have a hard time writing, or that you have a laptop or some sort of device other than pen and paper, is harder to do than you'd think… especially when you look "normal" and nothing is flared, teachers might not believe you. For me though, the hardest challenge was when my friends would go out and do something active or fun, and then I would find out about it after the fact. I would be really upset because they didn't ask me if I wanted to go, while at the same time I understood that they didn't ask me because I was flaring and wouldn’t have been able to go anyway. The bottom line is that feeling left out, especially as a teen, is hard.

What recommendations would you offer to children or teens that have been just diagnosed?
Make sure to have friends that will understand, or will try to understand, what you are going through. Finding friends that also have JA is wonderful and I have made lifelong friendships through the programs that the Arthritis Foundation has held.

Always remember that you are a strong person and having arthritis does not mean that you won't be able to achieve your goals!


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

 

 


 

The All New KidsGetArthritisToo.org

A new website for kids, teens and parents affected by JA offers fresh and valuable information.  

KGAT websiteIntroducing a new website from the experts you trust!

www.KidsGetArthritisToo.org


Everything you need to live better with juvenile arthritis, now in one place.
• Latest JA information and treatment updates
• Coloring pages about JA
• Perspective stories from kids and parents
• Tales of JA success
• BLOGs about JA
• Tips from teens
• JA Research breakthroughs
• Resources to find a medical specialist

Check it out today!

 

 

 

 


 

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.  

 

JA conference logoSave 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!

“My family and I had the wonderful opportunity to attend this year’s National JA Conference. I cannot express how much this conference helped our family grow stronger. The support that was provided by the hundreds of families in attendance, the amazing staff, and all the wonderful volunteers was incredible! We definitely walked away feeling very confident that through the research and hard work of so many wonderful people and the Arthritis Foundation, there will be a cure in the near future! I would like to encourage all JA families to attend next year’s conference and benefit as we did! It will be an experience you will never forget!”
-Annie Viola, JA Mom and Co-Leader of Utah P2P JA Family Network


Watch the 2014 JA Conference launch video, and stay tuned to the National JA Conference page for future updates.

 

 

 


 

Register Now for a JA Family Program Near You!

A series of fall events offer JA education, new friends and helpful resources for the whole family.  

 

family dayJA Family Programs are fun-filled days for the whole family! Kids and teens enjoy activities and games while parents participate in educational sessions facilitated by pediatric rheumatologists and other health professionals.  Educational sessions may address topics such as disease management techniques, updates in medication and treatment, parent support, family dynamics, transition and school issues.

Join us for a JA Family Day near you:

Utah JA Family Day - October 5, 2013  

Colorado JA Family Day - October 26, 2013

Idaho JA Family Day - November 9, 2013 

 

Also coming up this fall is a JA Teen Retreat:

California JA Teen Retreat - October 11-13, 2013

 


 

Photo Postcards from Across the Region

 

thank you postcard

 

Hadley from Camp JAM says, "Thank you to everyone who supported
Arthritis Foundation camps in the Great West Region!" 

 


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.

aaho@arthritis.org

888.391.9389 / Option 7 / Ext. 101

 

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