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

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Articles This Issue

Camps Give Hope & Life Lessons to Kids with JA
Juvenile Arthritis doesn’t stop hundreds of local kids from having the quintessential American summer camp experience.  Find out more and discover your local JA Camp.

Spotlight on CARRA
Helping to find a cure for childhood rheumatic diseases. Find out how.

Growing Up with JA: Tales of Transition
Shelly Spence's diagnosis of arthritis led her to value her health, her mobility and staying strong. Read her story. 

The Pursuit of Pediatric Rheumatologists
The specialists who care for children with juvenile arthritis are in high demand.  The Arthritis Foundation's advocates are working to change this for the better.  Find out how you can help

Faces of Arthritis

Photo Postcards

Community Connections

Connect with Us

 

 


Camps Give Hope & Life Lessons to Kids with JA

Juvenile Arthritis doesn’t stop hundreds of local kids from having the quintessential American summer camp experience. 


Every summer, hundreds of campers gather at the Arthritis Foundation, Great West Region’s juvenile arthritis (JA) camps. These four camps include Camp Juvenile Arthritis Matters (JAM) in Oregon, Kids and Teens’ Families Investing Support and Hope (KAT-FISH) Camp in Washington, Camp Milagros in California, JA Camp in Colorado, and Camp Limberlimbs in Montana. Camp JAM and KAT-FISH Camp provide camp experiences for the entire family, while kids with arthritis attend the stay-away camps in California, Colorado and Montana.

“Our JA summer camps offer the chance for these kids to have a traditional summer camp experience, without worry that they won’t be able to participate in any activities because of their arthritis,” says Andrea Aho, manager of juvenile arthritis programs for the Arthritis Foundation, Great West Region. “Every activity is adapted to meet the needs of campers with JA - whether it’s a climbing wall, archery, field games, pool time or crafts. No one sits on the sidelines at our camps.”

“From afar, our camps look like any other summer camp,” continues Aho. “But look more closely and you’ll see the tubs of sunscreen we provide for kids who are sun sensitive because of their disease or medications, the extra rest times built into the schedules so our campers don’t flare, the bottles of hand sanitizer to protect our campers whose immune systems are suppressed, the piles of heating pads and ice packs for painful joints, and the dozens of medical professionals who volunteer their time to give our campers round the clock medical care and education.”

“Beyond all those things that make our camps unique – the real magic comes from the role-modeling that takes place at camp. Our youngest campers, or recently diagnosed kids, get the chance to meet teens and young adult volunteers who have faced the diagnosis of JA. The campers learn life lessons from these role-models who have overcome things like long periods of illness, bullies, struggles to keep up in school, misunderstanding from friends and feelings of isolation. The campers gain hope… and that’s the most powerful effect of all.”

This magical effect of camp shines through in the testimonials from campers and parents as well.

Annemarie C., a camper from KAT-FISH Camp, remarked, “Going to camp was a great way to talk to others about my arthritis and how I was feeling every day because I knew that they were in the same boat that I was. My friends from camp and I got to talk about how we each manage our arthritis, what medicines we take, and what we like to do for fun. I could have never done that with my other friends. They just would not understand and I was afraid of getting teased about it. The friends I met from camp keep me going and help me feel better when I am down.”

“When we got home after the camp it was time for my daughter’s shot of her biologic medication,” said Edie N., the parent of a JA camper. “For the first time, she was able to concretely understand the direct relationship between her medication and her health. This time she didn’t fight the shot. She didn’t complain. And she didn’t feel sorry for herself. With courage she got the shot ready for us to give to her and she was more open to discussion about ideas that might make the process less painful. She now has an understanding and acceptance that it is the medication that is allowing her to have the quality of life that she enjoys.”

In addition to JA summer camp programs, the Arthritis Foundation, Great West Region hosts other JA activities to gather families together for support and education, including Juvenile Arthritis Family Days in Utah, Idaho and Colorado, a teen retreat in Northern California, and networking and parent support events across the Region. The Arthritis Foundation has also begun a promotional partnership with the Southcentral Foundation’s Camp Arctic, held at Kenai Lake in Alaska – a four day camp program for Alaskan kids with JA and their parents/guardians. In 2014, the Great West Region will host the National Juvenile Arthritis Conference in Colorado. This multi-day family event brings together families from across the country (and some international families) for education, networking and fun-filled activities.

As the rate of juvenile arthritis diagnoses increase, so do the needs for JA programs and services. We invite you to volunteer your time, pledge your support, tell other people that kids get arthritis, too. Any of these actions can pave the way for a better future for people with arthritis of all ages.

Find out more:

http://www.arthritis.org/washington/juvenile-arthritis/

GWR JA Camps 

 


 

Spotlight on CARRA

Helping to find a cure for childhood rheumatic diseases.

By Dawn Kimball, JA Mom & Co-Founder and Co-Chair of the Oregon Juvenile Arthritis Task Force

When my daughter was first diagnosed with Juvenile Idiopathic Arthritis (JIA) ten years ago, my family decided to channel our energy and anger into DOING something. The first logical step was to become active with the Arthritis Foundation, traveling to Washington DC as advocates, emailing representatives, and helping to create a support network for children with JIA. Since then, we’ve also become active with the Childhood Arthritis and Rheumatology Research Alliance (or CARRA).

researcherCARRA consists of a network of 350 pediatric rheumatologists working together across North America. Through collaboration, their research is focused on finding a cause and a cure for childhood rheumatic diseases, including JIA, lupus, and juvenile dermatomyositis. CARRA’s mission is “to prevent, treat, and cure rheumatic diseases in children and adolescents through fostering, facilitating, and conducting high-quality research.”

As a parent of a child with a rheumatic disease, you can support CARRA by agreeing to participate in research projects, including their registry. CARRA has created a database of children who suffer from rheumatic diseases. The purpose of this registry is to “[collect] information and [increase] the understanding of childhood rheumatic diseases” through a huge repository of data about children and their experiences with these diseases.

There are other ways to get involved too. If your child qualifies for an additional research opportunity, your pediatric rheumatologist may ask you to take part. My daughter is currently enrolled in WebSMART, an online pain management study that's for children with JIA. You can also become a member of CARRA’s parent group, Friends of CARRA, which raises money for CARRA research through fun activities and events held throughout the year in many local communities.

While a diagnosis of a rheumatic disease may seem overwhelming, my family has found that channeling our energy into doing SOMETHING has helped us cope. And NO effort is too small if goes toward finding the cause and cure for childhood rheumatic diseases.
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The Arthritis Foundation supports the incredible work of CARRA by committing $250,000 each year to cover key infrastructure needs of the network such as on-site research study coordinators, research nurses, and administrative support. The Foundation also recently provided $275,000 to support the CARRA registry and Innovative Research Grants to researchers that utilize CARRA resources to conduct promising studies.

Find out more:

For more information on Friends of CARRA, and how to get involved in your local area, click here.

For more information on CARRA and the research they’re conducting, check out their website.

 

 


 

Growing Up with JA:
Tales of Transition

 

young woman

 

Shelly Spence
Vancouver, WA

Diagnosed with rheumatoid arthritis at age 14
Currently 33 years old

 


Diagnosis story
I was clinically diagnosed with rheumatoid arthritis (RA) at 14 years old. I was running cross country at the time in school, and I wasn’t good at it. I hurt all the time and my feet would hurt really badly. One morning I woke up and I couldn’t put any weight on my feet – they were in so much pain.

I was showing symptoms of arthritis as early as 10 years-old, having puffy knees, limping and other symptoms. But because we lived in a super, super small town we didn’t have access to any specialists, so my diagnosis of RA took a long time.

I’m affected by RA in my feet, knees, hips and hands. Lately it’s my feet and hands that give me the most trouble.

I’m off my meds right now because my husband and I are trying to start a family. My RA isn’t as controlled right now, but I’m still doing alright.


What are some of the biggest challenges you’ve had because of your arthritis?
Getting people to have an understanding of the fact that a lot of times I don’t look sick has always been hard. Like a lot of people, my RA isn’t super noticeable, even when I’m flaring. This was really hard as a child and is still hard as an adult. I can climb down a mountain one day, but can’t even tie my shoes the next day.

I’m pretty active. I ride my bike to work, ski, and walk often, but people don’t see that I have to go to bed at 8:30 p.m. some nights to get enough rest, or that I can’t clean my house as often as I’d like because I feel worn out.

I feel bad for my family and loved ones when I don’t feel well enough to do things as fast as the group, or when we have to cancel plans because I can’t do certain things at all.


How did you first get connected with the Arthritis Foundation?
When I was in college I wanted to be an event planner and I thought that the Arthritis Foundation would be a great place to develop these skills and gain experience. I had an internship with the Arthritis Foundation office in Portland, where I worked on the Joints in Motion marathon training program.

 

What were some of the ways that the Arthritis Foundation initially supported you?
I always thought that there was no way that I could do a marathon. I thought that I couldn’t do it because I had arthritis. But the staff at the Arthritis Foundation told me that I should do it because I had arthritis. This encouragement led me to complete my first marathon in Honolulu. After that, I set the goal of doing ten marathons in ten years… and I reached this goal after seven years. My next goal is to complete ten half-marathons in ten years. I’m well on my way to completing this goal by 2017.

 

When you were diagnosed, what were some of your perspectives about arthritis and your future?
I thought I was going to be in a wheelchair. When I was diagnosed, the only other person I knew with arthritis was this poor little old lady named Daisy. She was really affected by arthritis.

The first time I met someone my age or younger with arthritis was when I was 24 years-old at KAT-FISH Camp. It was great. I love to work with the teens at camp as a volunteer. Camp gives the campers the chance to talk to other campers that are going through the same thing – and this is so important! I wish I had someone to talk to like this when I was that age.


How does the perspective you have gained from having arthritis influence or motivate you?
I value my health a lot more. I value my mobility because I know how fast it can be taken away. I value how important it is to stay strong and healthy .


What are your strategies for managing arthritis, both physically and mentally?
Sleeping is key. I’m a big sleeper and I like to go to bed early. I try to go to bed by 9:00 p.m. a couple of times per week.

Routine is also important for me. I ride my bike to work a couple of times a week. If it’s raining or if my health gets in the way, I still push myself to bike to work. I try to make commitments and I stick to them, and I always feel better for doing it.

Finding something you enjoy doing is really valuable. The worst thing you can do is to stop doing an activity because it hurts. Whether it’s sewing, scrapbooking or biking – you can always find ways to adapt an activity so that you can still do the things you love.


What do you feel are some of the biggest challenges that teens and young adults with JA face?
Knowing your limitations and figuring that out is hard. When you’re younger your friends may be going out and doing lots of things like dancing, but you may have to pick and choose and prioritize what you can or can’t do because of your arthritis.

You have to learn to say no or to find out how to modify an activity so you can still take part.

This is a pretty difficult thing to do and there are a lot of hard lessons learned.


What recommendations would you offer to teens and young adults who have been just diagnosed?
Take it one day at a time.

Get to know your own body, your own health, your own medications.

Arm yourself with education.

Surround yourself with positive people.


Find out more:

Read the stories of other teens and young adults, like Shelly, who are affected by arthritis.

 

 


 

The Pursuit of Pediatric Rheumatologists

The specialists who care for children with juvenile arthritis are in high demand.  The Arthritis Foundation's advocates are working to change this for the better.

 

Arthritis is a disabling and painful disease that affects 50 million Americans, including 300,000 children. Nearly 1 in 250 children are living with a form of arthritis. Juvenile arthritis is one of the most common childhood diseases, affecting more children than cystic fibrosis and muscular dystrophy. Currently, there are less than 250 board certified, practicing pediatric rheumatologists in the United States and about 90 percent of those are clustered in and around large cities. Pediatric rheumatology has one of the smallest numbers of doctors of any pediatric subspecialty. Of those children with juvenile arthritis, only one-fourth see a pediatric rheumatologist due to their scarcity. The other 75% of juvenile arthritis patients see either pediatricians (who tend not to be trained in how to adequately care for juvenile arthritis) or adult rheumatologists, who aren't trained to deal with pediatric issues, whether it’s the stunted bone growth that can result from arthritis and its treatment, or the unwillingness of an adolescent to take his medicine. Furthermore, the diseases that are common in children can be very rare in adults, so a rheumatologist may have rarely, if ever, had occasion to diagnose and/or treat those related diseases and co-morbidities. There are currently eleven states that do not have a single practicing pediatric rheumatologist and seven states with only one pediatric rheumatologist.

Ped. Rheum. Map

 

Pediatric Subspecialty Loan Repayment Program

The pediatric subspecialty loan repayment program was authorized by Section 5203 of the Affordable Care Act (ACA) in March 2010. The program, which would be administered by the Health Resources and Services Administration (HRSA), would incentivize training and practice in pediatric medical subspecialties, like pediatric rheumatology, in underserved areas across the United States. The program would offer up to $35,000 in loan forgiveness for each year of service for a maximum of three years. The program was authorized for $30 million for FY 2010 through FY 2014, but has yet to be appropriated any funding.
President Obama requested, in FY 2013 budget, $5 million dollars to fund the Pediatric Subspecialty Loan Repayment Program.


What Your Members of Congress Can Do to Act on this Issue

To help alleviate the current shortage of pediatric rheumatologists in the United States, the Arthritis Foundation urges Congress to appropriate $5 million to fund the Pediatric Subspecialty Loan Repayment Program in FY 2014.


What You Can Do to Act on This Issue

  • Watch Kristen’s Story, a powerful video created by the Arthritis Foundation’s Southeast Region, to learn more about the shortage of pediatric rheumatologists in America and the impact it has on patient access to care, disease management, and a childhood.
  • Share this map that demonstrates the critical need for more pediatric rheumatologists in the United States
  • Share this issue brief with your family, friends and community leaders
  • Share this Arthritis Foundation letter with your Member of Congress.
  • Download a joint letter submitted by the Arthritis Foundation and the American College of Rheumatology to the Appropriations Subcommittee on Labor, Health and Human Services requesting their support for this program.

 

 


Faces of Arthritis

 

Faces of Arthritis




Jeffery and Abbigale from Idaho are two of the 50 million faces of arthritis. Read their story and the story of others affected by arthritis at facesofarthritis.org

 

 

 

 


 

Photo Postcards from Across the Region

 

Photo Postcards


Sixth grader Allison W. (who has JA) organized a “Wear Blue Day” awareness and fundraising event on May 3, 2013. Students in schools throughout the Walla Walla School District in Washington dressed in blue to show their support.

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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