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

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Articles This Issue

Making an Impact
JA Camp volunteers strive to help children with arthritis through their volunteerism. Find out more.

You Don't LOOK Sick! Living Well with Invisible Chronic Illness
A new book focuses on the journey to "living well" with a hidden disease. Read an excerpt.

New Ways to Talk about Juvenile Arthritis
Local families discover that participation in Arthritis Walks brings unexpected benefits. Discover how.

Growing Up with JA: Tales of Transition
Hailey's tale of discovering that arthritis and exercise can work together. Read her story. 

Two Biologics Help Children with Systemic Juvenile Arthritis
Actemra and Ilaris could be "game changers." Find out more

Watch Live! Experts Discuss the Evolution of Research into Arthritis Treatments
Join advocates virtually through two live streaming sessions at the Arthritis Foundation Advocacy Summit. Discover more.

National JA Conference
Find out about the 2013 National JA Conference in Anaheim, California. Read the latest updates. 

Photo Postcards

Community Connections

Connect with Us

 

 


Making an Impact

JA Camp volunteers strive to help children with arthritis through their volunteerism


Hosting a camp for kids and teens with rheumatic conditions, along with their families, is truly a team effort. Hundreds of volunteers make the Arthritis Foundation, Great West Region’s four regional camps possible each year and make a difference in the lives of the families we serve.  These volunteers tell us that in return, they are deeply impacted by their experience.

We want to introduce you to four remarkable individuals who donate their time to the Great West Region JA Camps.  Each of these volunteers brings a unique set of experiences and perspectives to their volunteerism.

Helping Patients Find “Wholeness”Dr. Peggy
Dr. Peggy Schlesinger, affectionately referred to as “Dr. Peggy” by many, is a Rheumatologist at Seattle Children’s Hospital and founder of Camp Limberlimbs Montana. In a recent presentation to a room full of medical students, she described how the concept of chronic disease is hard for children to grasp because it is very different from any other illness they have experienced in their life. Kids often think that a throat swab will “take all the bugs away” and they will get better. Dr. Peggy knows that it can be a long process for kids to come to the realization that their rheumatic disease won’t go away like other illnesses they have experienced or heard of. As a physician, Dr. Peggy is passionate about truly connecting with her patients and she volunteers her time to help them through this process of “finding wholeness”. She means the world to kids and teens at camp!

A parent's perspective on Dr. Peggy
As a parent of a young child diagnosed with JA, words cannot express my gratitude for Dr. Peggy Schlesinger.  Our son Luke was diagnosed at 18 months with JA, and from the beginning I knew that our child was in the best hands possible with Dr. Peggy. She shows a genuine love and concern for her patients and their families.  Her patients’ health and future is her number one priority.  She has always been there for Luke, and he has always looked forward to their visits.  We have been blessed with her knowledge of the disease and her optimistic approach to the road that our child has faced.  She is a doctor who obviously loves what she does, and it shows on the smiles of her patients that she has such an amazing impact on.
 -Carrie Heaphy

Understanding a Sibling’s DiseaseJens
Jens Pascucci is a Financial Advisor and in his free time he volunteers for the Arthritis Foundation’s family camp, KAT-FISH Camp. Jens started volunteering shortly after his sister was diagnosed with arthritis. He felt like his involvement with the Arthritis Foundation provided a positive way for him to give back to the community and to learn more about what his sister was going through. At camp, Jens can be found leading games in the Teen Lounge or serving as a Camp Counselor for the oldest teen group. He has also been known to don a suit and tie and use his professional skills as a Certified Special Needs Advisor to provide a presentation on planning and Special Needs Trusts for parents.

Putting Personal and Professional Experience to WorkShannon
Shannon Braasch is an Arthritis Foundation Ambassador and Camp Limberlimbs Colorado volunteer. Shannon knew that her personal experience living with Lupus and her graduate degree in community counseling could help her relate to kids and teens who live with arthritis. However, she was surprised to learn that she “gained just as much as the kids” out of the camp experience. She loves that Camp Limberlimbs in Colorado encourages independence and that parents feel safe sending their kids because they know they have “the best possible medical care” while they are at camp. After her first summer volunteering at Camp Limberlimbs, Shannon confidently tells others “it’s one of the best experiences I’ve ever had”.

Giving Back to the CommunityJoe
Joe Barnes started volunteering with the Arthritis Foundation’s Oregon office and after a while decided to help out at Camp JAM. He realized that “what Camp JAM was giving to these kids was so much more than I could ever imagine”. Helping kids learn about themselves and realize “they aren’t as limited as they think” is important to him. He tells us that camp “never ceases to amaze me and I feel like I learn so much more than they do!” Joe is a strong believer in giving back to others and says “in the end, I feel our lives should be all about the kids and I think this is a perfect way to support that belief.”


Find out more:
Consider volunteering at one of the Arthritis Foundation’s JA Camps this summer. Contact Andrea Aho for more information.

Camp JAM - Canby, OR
Three-day camp program for the whole family
August 9-11, 2013

Camp Limberlimbs Colorado - Estes Park, CO
Six-day camp program for kids with JA, ages 8 - 16
July 13-18, 2013

KAT-FISH Camp - Stanwood, WA
Three-day camp program for the whole family
July 26-28, 2013

Camp Limberlimbs Montana - Gold Creek, MT
Three-day camp program for kids with JA, ages 6 - 17
September 20-22, 2013

 


 

You Don't LOOK Sick! Living Well with Invisible Chronic Illness

A new book focuses on the journey to "living well" with a hidden disease.

book cover Juvenile arthritis, like many forms of arthritis, can be an invisible disease. Learning to "live well" with a chronic illness that others cannot easily see can be a long process.

In the Introductory Conversation of their new book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, patient Joy Selak and her co-author and physician, Dr. Overman, discuss what prompted them to write a book together. Joy describes the confusion she experienced at the onset of multiple, chronic conditions and the difficulty she had finding her way to a compassionate physician. With Dr. Overman’s help, she was able to navigate the difficult physical and emotional phases of the chronic illness experience, which they call Getting Sick, Being Sick, Grief and Acceptance. In time she is able to find her way to the fourth phase, Living Well, even with illness.

Below is an excerpt from You Don’t LOOK Sick! Living Well with Invisible Chronic Illness - Introductory Conversation - by Joy H. Selak and Dr. Steven Overman, 2nd Edition, Demos Health.

Dr. Overman
Even though we don’t fully understand how or why, I believe all of Joy’s diagnoses are likely related to one another, much like the elephant that was really one beast, even though each of the blind examiners could only identify the separate parts.

Joy
It wouldn’t make much difference if the blind men could see all of me, since my symptoms are invisible. Since I don’t look sick, I don’t get much acknowledgement for being sick. Often people are downright skeptical about the reality of my illnesses, and say so. I wasn’t able to find many books to prepare me for the real world of living with illnesses like mine either. Most promised to explain ‘Everything You Ever Wanted to Know’ about one specific disease, but I have several, with symptoms that overlap. Other books offered ‘Seven Easy Steps to the Cure’ and implied that if the promised cure didn’t happen for me, it was somehow my own fault. If my doctors couldn’t offer me a cure, the last thing I needed was blame myself for failing to do so.

I decided I should write the book I could not find, but wanted to read. It wouldn’t overwhelm the reader with technical information or promise an easy fix, but it would make them feel recognized. Readers would know they weren’t alone in feeling scared and angry. They would feel empowered to fight for their rights and needs. I could offer hope that finding peace and personal growth can be a part of the long-term illness experience.

I asked Dr. Overman if he would write the book with me. It took me a long time to find Dr. Overman, and I thought by demonstrating how we work together, readers would be encouraged to keep looking until they found the right doctor for them. He could add his professional insight and wisdom and share other patients’ stories, so readers would get more than just my experience. Between the two of us, perhaps the book could become a useful roadmap to guide others on a journey to a better life with illness.

Dr. Overman
When Joy first asked me to write a book with her, I casually said, “Sure,” assuming the idea would pass. Obviously, I didn’t know Joy very well yet, but I was curious and began to talk to my patients about these ideas. I asked, “What would be your best advice to help someone live well with a chronic illness?”

One patient gave my question some thought, and wrote this insightful response: “To live well, you need to understand that in a fast-paced, success-oriented society you are still valuable, even though you may be bedridden, unemployed, or suffering from chronic pain. The way to do this is to retain a positive self-image and a sense of usefulness. This is difficult to do, but essential.”

The next time Joy asked me to co-author her book, I realized she was serious and I was hooked. I responded with a sincere and enthusiastic, “Yes!”

Find out more:

You Don’t LOOK Sick! Living Well with Invisible Chronic Illness by Joy H. Selak and Dr. Steven Overman can be ordered online.

Read another perspective of life with a chronic illness, the Spoon Theory.

 

 


New Ways to Talk about Juvenile Arthritis

Local families discover that participation in Arthritis Walks brings unexpected benefits.


Each spring, the Arthritis Foundation holds hundreds of Arthritis Walks across the United States. These high energy events bring together local communities and people with arthritis of all ages and diagnoses. The Arthritis Walk is a proven way to raise support and community involvement around arthritis.

Beyond raising funds and community involvement for arthritis, there can be other great results for JA families that get involved with a local Arthritis Walk. These unexpected results can lead to kids with juvenile arthritis feeling better prepared and supported in dealing with their disease.

Joanne Brennan, and her 11 year-old daughter Claire, have had this experience. Diagnosed with juvenile rheumatoid/idiopathic arthritis at age two, Claire had many struggles related to her JA over the years. Claire took part in the Denver Arthritis Walk in 2011 and then served as a Walk honoree in 2012.
Claire Brennan
Claire’s school became actively involved with the Arthritis Walk after Claire first signed up for the event.

“Claire’s teacher really helped to get the word out about the Walk. She put up posters throughout the school, formed a team and raised money through the school towards the Walk,” says Joanne. “Because of her Arthritis Walk involvement, Claire had the opportunity to talk to her classmates about her arthritis and talk to other classrooms, too.”

Joanne continues, “After her presentations to her classmates, there were a lot of kids going up to Claire, and parents coming up to me, who said ‘Oh my gosh, I had no idea that kids get arthritis.’”

Eighteen year-old Claire Bradbury echoes that sentiment. Diagnosed with juvenile idiopathic arthritis and spondyloarthropathy at age 12, Claire had many difficulties throughout her childhood when she tried to explain her JA to friends, teachers and family members.
Claire Bradbury
“I joined the Anchorage Arthritis Walk when I was 13 years old and have been involved with other Arthritis Foundation events since then,” Claire says. “I invited a lot of my friends to the Arthritis Walk. It helped people to better understand my arthritis and allowed an opportunity for friends and teachers to ask me about it.”

She continues, “People were always wondering why I had knee braces on, but never knew how to ask me about it before then. There were other things they had always wondered about, too, like why I wasn’t in gym class and why I couldn’t sit still in my classes. Once they had the opportunity to ask me about it, I could tell them things like how it was important for me to get up, walk around and stretch during class to make my joints less stiff.”   

“It also helped my siblings to learn more about my arthritis and then understand why I couldn’t always do my chores or other things at home.”

Beyond creating awareness of arthritis among friends and classmates, taking part in the Arthritis Walk can help those with JA feel more confident about their disease.

Joanne offers, “After Claire was the honoree for the Walk and had to talk to hundreds of people at the event about her arthritis, it gave her a big boost to her confidence. When she saw that crowd of people it showed her that people really care about these issues.”

“Now advocacy is very important to Claire,” Joanne says. “She wants to keep using her voice to find better treatments and a cure.”

Claire Bradbury saw firsthand the results of creating broader community awareness of arthritis and the impact that the Arthritis Walk can have on others.

“When I was an honoree at one of the events my face was plastered on posters all over town for the event. A lot of people came up to me and said that they had no idea I had arthritis,” Claire reminisces. “My neighbor was one of those people. He had arthritis, too. We started talking about some of the troubles he was having with his disease, and was able to help him and get him connected to arthritis information.”

Joanne and Claire have a similarly impactful story.

“There was a very powerful moment that happened after the Walk for Claire,” says Joanne. “At the Walk there was a girl with JA in the audience that was going to be attending our local JA Camp for the first time that summer. She wrote a letter to Claire after the Walk to say that she couldn’t wait to meet her at camp. That really showed us how Claire’s taking part in the Arthritis Walk didn’t just impact her and her classmates and friends, but other people, too.”

Some families might have hesitations about getting their child with JA involved with a public event like the Arthritis Walk. Is it too soon after their diagnosis? Will it be too overwhelming to meet so many others with arthritis?

Claire offers her perspective about these concerns. “I thought I understood my arthritis, but it wasn’t until I met other kids with arthritis and spoke with them that I realized new ways I could manage my disease, like that I needed more sleep. It really helps to be around other people with arthritis to see the different things they’ve learned that can help you. Most importantly, it shows you that you are not alone.”


Take Action:
Find your local Arthritis Walk today. Talk to your local Arthritis Foundation office staff about how you can get involved in the Arthritis Walk and take proactive steps to build awareness of juvenile arthritis.

 


 

Growing Up with JA:
Tales of Transition

 Hailey
Hailey Daniels
Ogden, Utah
Diagnosed with arthritis at age 15
Currently 16 years old

 

 

Diagnosis story:
“I was diagnosed with Juvenile Rheumatoid Arthritis in September of 2011. My arthritis affects my hands, particularly my left hand, my knees, my wrist and sometimes other places.”

What are some of the challenges and ups and downs you’ve had since diagnosis?
“When I was first diagnosed, it was hard accepting the fact that I had arthritis. I was in the middle of my tennis season, really busy with student government and there were a lot of things going on in school – it was a crazy, busy time. It was hard and stressful to adapt to everything, work with my teachers and tell them about my arthritis. I was on an emotional rollercoaster. I realized that it was something that I had to get used to and that I needed to adapt, but that it would take time.”

How did you first get connected with the Arthritis Foundation?
“A month after my diagnosis I was doing a lot of research into what was going on with my body. I found the Arthritis Foundation website. It was so cool – there was a lot of good information. I found out that there was a local office in Salt Lake City. I stopped by the office to ask questions and share some ideas I had and find out how I could get involved and help out. Shortly after that, the Arthritis Foundation asked me to be the honoree for the 2012 Salt Lake City Arthritis Walk. A few months after that I was also one of the honorees for the People’s Coast Classic bike event in Oregon.”

What were some of the ways the AF initially supported or helped you?
“The biggest thing was that the Arthritis Foundation gave me ways to get involved so that I could forget about my problems of having arthritis, learn more about it and help other people at the same time.”

When you were diagnosed, how physically active were you?
“I was really active when I was diagnosed. I was in the middle of my tennis season. I was running a lot. I was also very busy with student government.”

Hailey videoHow has exercise and physical activity helped you and your arthritis?
“Exercise helps me feel better overall, especially my self-esteem. After I exercise my attitude is better and I feel better about myself. For me, I feel like it’s a non-productive day if I don’t exercise. Mobility and activity helps me forget about any problems or pain.”

What’s your advice for others with JA who want to start exercising? How should they get started?
“They should find things they are interested in and try them out. Like I just joined the swim team this year, and I love it. Find the activities you are passionate about. Do it in baby steps, though. You may not be the best at a new activity at first, so plan to work up to the sport you want to play. Do activities with your friends, too. That always makes it more fun. There are so many cool activities out there… Zumba, yoga (super good for your joints), swimming (is almost always pain free). Go out there and do it!”

Does arthritis still influence your everyday life?
“My arthritis is always something that’s on my mind. I’m probably never going to have a day where I don’t think about it. But it also motivates me to be better and push myself, whether it’s when I’m writing, in school, playing tennis or running.”

How does the perspective you have gained from having arthritis influence or motivate you?
“Having arthritis makes me want to accomplish things even more and reach the impossibilities. It doesn’t bring me down, because I know that no matter what, I can still accomplish my dreams. I wake up every morning and decide to have a positive day. I want to tell my arthritis what’s up, not the other way around. In this way, sometimes I feel like my arthritis is more of a blessing than a trial. It’s given me an even stronger perspective on what’s important.”

What recommendations would you offer to teens and young adults who have been just diagnosed?
“Don’t get discouraged. Think of arthritis just as a bump in the road. It’s not going to take over your life. People have lots of challenges in life, and arthritis is just one of them. Don’t let it shape you and tell you who you are or what you can or can’t do. You are more than arthritis.

I was in shock mode when I was diagnosed. Then my sister Jenisy called me. She said ‘Don’t let this disease control you or scare you. Don’t let it hold you back. You’re going to make a difference and turn this trial into a positive experience. I know it.’

Just like my sister, know that there are people around you that love and support you. Don’t forget that. Find someone to talk to! Call me or find a local person with JA through the Arthritis Foundation to talk with about arthritis. It helps!”

 

Find Out More:

Watch a video excerpt of Hailey talking about being active and juvenile arthritis.

The Arthritis Foundation has many resources to help teens and young adults with JA connect with one another. Finding someone to talk to who shares similar challenges can be extremely worthwhile. Contact the Arthritis Foundation to find out more about how to make these connections.

 

 


 

Two Biologics Help Children with Systemic Juvenile Arthritis

Actemra and Ilaris could be “game changers.”

By Jennifer Davis / Reprinted from ArthritisToday.org

 

biologics

1/9/13 New studies testing the effectiveness of two biologics in children with systemic juvenile idiopathic arthritis (sJIA) have found that both drugs – tocilizumab (Actemra) and canakinumab (Ilaris) – result in major improvements. In some cases, kids felt better within a day.

“The results are thrilling. They are dramatic. They will be game changers for kids with sJIA,” says Daniel J. Lovell, MD, co-author of the studies and associate director of the division of rheumatology at Cincinnati Children's Hospital Medical Center.

Actemra was approved by the U.S. Food and Drug Administration (FDA) in 2011 for sJIA, a potentially life-threatening form of juvenile arthritis that causes inflammation in joints and organs, as well as fevers, rash and fatigue. But Dr. Lovell says that some pediatric rheumatologists have been waiting to see the results of larger clinical trials before prescribing Actemra in lieu of older drugs.

Ilaris is not FDA-approved for sJIA, but it is prescribed for the condition “off-label.” Novartis, the drug's manufacturer, says data from the trials form "the basis for worldwide regulatory submissions," which is "on track" in the U.S.

The new research – carried out by two international research networks, the Pediatric Rheumatology Collaborative Study Group and the Paediatric Rheumatology International Trials Organisation – was published recently in two articles in The New England Journal of Medicine. The first article detailed a randomized trial of tocilizumab, a drug that inhibits interleukin-6 (IL-6), a cytokine – or molecule – involved in immune and inflammatory processes. The study found that two-thirds of patients taking tocilizumab had significant improvement after just one dose. After a year on the drug, 80 percent of patients had no fever and an improvement in symptoms of at least 70 percent.

The second article detailed two randomized trials of canakinumab, which targets a different cytokine, interleukin-1 (IL-1), also involved in immune and inflammatory processes. The first trial, which lasted nearly a month, showed 84 percent of participants had marked improvement in symptoms after two weeks on the medication. The second (longer) trial showed 74 percent had no flares compared to those receiving placebo.

“With either treatment the systemic features resolved very quickly – from a few hours to a few days. In many cases you start the medicine in the morning and come back in the afternoon and the kids are feeling better. It’s extraordinary,” Dr. Lovell says. “It’s like these two agents are designer drugs for sJIA because the disease is driven by either interleukin-1 or interleukin-6, or a combination of the two. You can block either one and for 80 percent of these kids, it’s truly dramatically different. Their lives are profoundly different.”

Dr. Lovell says the results of these studies are especially encouraging because the improvements were seen in children who were treatment-resistant.

While older biologics – TNF inhibitors – are prescribed for some types of juvenile arthritis, they are not very effective in controlling the whole body (systemic) features of sJIA. Treatment with corticosteroids helps control the systemic symptoms, but used long-term, they carry a high risk of side effects, such as inhibited growth, high blood pressure and weight gain.

In both trials, the treatments allowed for a significant tapering of corticosteroids.

Dr. Lovell says long-term studies will look for answers to better understand long-term safety issues and address other questions, such as whether some patients have disease that is more closely linked to IL-6 or IL-1. “If you don’t respond to one of these agents, what are your chances of responding to the other? That’s an unknown question. That’s something that will need to be defined once the agents are out more in clinical use,” Dr. Lovell says.

Christy I. Sandborg, MD, a professor of pediatric rheumatology at Stanford University School of Medicine in Palo Alto, Calif., co-authored an editorial accompanying the studies that remarked on the impressive effectiveness of the drugs and the speed with which they helped children. But she agrees there is still a lot to learn about these medications.

“The question is, are they targeting the same thing? A similar step in the same pathway? Or are they targeting different things? And that’s something we don’t know,” Dr. Sandborg says.

She agrees long-term safety and efficacy need to be studied, especially if doses have to be increased over time. She also stresses that the medications didn’t help 20 percent of patients in these studies. “It doesn’t work in everybody. It’s not perfect. It’s not a silver bullet. But it’s pretty close to it,” Dr. Sandborg says.

“These drugs are incredibly effective. It really is a new era. And now it’s incumbent on us – doctors and the FDA – to monitor these agents to make sure that we understand the safety profile so that we can all make the best decisions and tailor the therapies,” she says.

Dr. Sandborg says one way to do that is through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) – an organization of more than 350 pediatric rheumatologists and researchers in the U.S. and Canada committed to researching juvenile arthritis. So far about 60 centers are working with the group to enroll children in a registry to track symptoms and treatments. To find out more, visit carragroup.org.

 

 


Watch Live! Experts Discuss the Evolution of Research into Arthritis Treatments

 

Join advocates virtually in D.C. through two live streaming sessions at the 15th Annual Arthritis Foundation Advocacy Summit. The first 25 online participants for each session will receive a FREE Faces of Arthritis shirt!Virtual Summit

Monday, March 4 from 3:00 – 4:00 p.m. Eastern: From Discovery to Drugs: How today’s research evolves into tomorrow’s treatments.
Follow the journey from microscope to drug development to patient hands. Learn just what it takes to get an idea to become a treatment.  During the session, leaders at the National Institutes of Health and the Food and Drug Administration will discuss the latest methods for turning research into real solutions for people with arthritis. Speakers will engage in an interactive Q&A session with local and online participants. Join at www.arthritis.org/virtual-summit.

Tuesday, March 5 from 8:30 a.m. – 12:00 p.m. Eastern: Arthritis Advocacy 101
Ever wondered what it takes to make Congress act? Learn from Washington’s leading lobbyists how to effectively influence your legislators and create lasting change on Capitol Hill.  Participate and follow the action in DC including a live Instagram and Twitter stream, guest bloggers, and the chance to email your elected officials about important arthritis-related legislative issues on the Virtual Advocacy Summit page.
 
Learn more about the Arthritis Advocacy Summit.

 


  

National JA Conference

 

JA ConferenceJoin us in Anaheim, California, July 18-21, at the Hyatt Regency Orange County for the 2013 National Juvenile Arthritis Conference.  Conference and hotel registration will open up in February 2013.

The National JA Conference is the Arthritis Foundation's signature nationwide event for families affected by juvenile arthritis. The conference is a three-day educational event that focuses on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases. The whole family is invited!

Check the 2013 National JA Conference website for updates and more information!

 

 

 


 

Photo Postcards from Across the Region

 facepaint

 

Seven year-old Ellie M. shows off her facepaint from the fall KAT Auction, a parent organized fundraiser for the Arthritis Foundation.

 

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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