News for friends of the Arthritis Foundation, Great West Region
Articles This Issue
Winnable Moments Against Arthritis
A look back at the countless stories of people overcoming arthritis in 2012. Read their tales of triumph.
Why I Volunteer
Volunteer Jane Johnson’s in-office volunteerism helps people with arthritis get the information they need. Read her story.
Improving Juvenile Arthritis Diagnosis and Treatment with Utrasound
Learn how ultrasound is transforming the way juvenile arthritis is diagnosed and treated, making evaluation and therapy faster and more accurate.
Local Researcher Receives Distinguished National Award
The Arthritis Foundation bestowed one of its highest nationwide honors to Seattle based researcher, Anne Stevens, MD, PhD during its national meeting in Colorado Springs, Colorado. Find out more.
Sun Valley Dirt Rally
New for 2013, join us for the Sun Valley Dirt Rally in Sun Valley, Idaho. Discover more about this charity cycling event.
A look back at the countless stories of people overcoming arthritis in 2012
Arthritis is a day-to-day battle for many affected by the disease. Pain, stiffness, activity limitations, medication side effects, burdens on finances, emotional fallout, challenges with work and school are just some of the many battles a person with arthritis can face often and unrelentingly.
But there are countless moments, big and small, where people affected by arthritis realize they are winning in this fight against arthritis.
The staff of the Arthritis Foundation, Great West Region hear these stories from people across the eight states of our Region every day. It is these moments that truly represent the resolve and determination of those affected by arthritis in their ongoing fight to manage their disease.
AFeatures has compiled a snapshot of these Winnable Moments of people with arthritis that were shared with us in 2012. These everyday successes show that with the right attitude, the right information and the right goals – anyone can have their own winnable moments against arthritis.
“Since taking the Arthritis Foundation Aquatics Program, I have lost 26 pounds and four dress sizes!” Mary R.
“My mom finally had the courage to get her hip replaced, and now that she is recovered she is a walking machine!” Sara O.
“I can walk without limping after taking the Arthritis Foundation Exercise Program. Kudos!” Beth M.
“The website helped me finally understand how my arthritis affects my body and joints and that makes me feel like I have more control.” David K.
“After taking steroids for my arthritis for the past 11 years, I finally was able to get the right meds and have come off the steroids. I’m so happy to be done with them.” Eliza S.
“As a parent, I cried when I dropped my son off at the Arthritis Foundation’s summer camp. Not because I was sad, but because I was so overwhelmed and happy that he was going to finally have a summer camp experience like every kid deserves and I wouldn’t have to worry about him feeling like an outcast there.” Karen K.
“My doctor came up with a treatment plan for me at the beginning of the year. Thanks to exercise, some changes in eating habits and the right combination of meds I am getting closer to pain free.” Maggie G.
“After I went to the Arthritis Walk and told my teacher and classmates, they learned about my juvenile arthritis and are nicer to me.” Allison F.
“My arthritis pain is always going to be around, but some of the educational classes by the AF made me feel like now I have more options for how to feel better.” Karen S.
“My son was our team captain at the Jingle Bell Run. It was a really neat way to get him involved with his sister’s arthritis in a positive way.” Ian S.
“I didn’t even know what type of arthritis I even had until the
Arthritis Foundation sent me some brochures about it. Now I
can even spell it!” Delores G.
“We made it to the camp and we loved it! It was our first year, so we didn't know what to expect. I have to say, we went home feeling like it was the highlight of our summer! Next year can't come soon enough. :)” Jennifer M.
“When we got home after the camp it was time for my daughter’s next medication injection. 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.” Edie N.
“My RA is a day to day event, but now I know that in the long run I will benefit from trying to keep more fit.” Kathy C.
“I sent my senator a message about how arthritis affects my life and he responded with an e-mail back to me. That was really cool.” Dylan B.
“I started a walking route with some of my neighbors on Wednesday mornings. I feel stronger now, and we have fun gossiping and laughing at the same time.” Eunice W.
“I was really proud to be able to run this year’s Jingle Bell Run in honor of my dad, who had terrible arthritis in his back and knees since he came back from World War II. He never complained, never asked for special treatment. I ran to honor him and all that he taught me about resolve, persistence and strength. I love you, Dad!” Carrie L.
“I’ve had osteoarthritis for over 30 years. My knee was getting worse, so I decided to take control. I started cycling and joined the Arthritis Foundation’s cycling events. I’ve continued to lose weight, which has decreased my knee pain dramatically. The other pertinent factors are keeping moving, working the joint and weight control is critical. The pressure factor on the knee is four times stronger for every pound of weight.” Pete H.
“My sister finally met other people with her type of arthritis, which is kind of rare. I think it really made her feel better to know she wasn’t out there alone.” Katy S.
“I think my doctor and I started off on the wrong foot, and we weren’t seeing eye-to-eye at first. This year something changed, and we have a more open and honest doctor patient relationship now. It makes a big difference.” Cara T.
“Last year I signed-up for the Arthritis Walk but wasn’t able to walk it at all. My goal was to walk at least half of it this year… and I finished the whole thing!” Laura F.
“I met another girl my age with juvenile arthritis. It was so weird and cool to talk to someone who knew what it felt like.” Lindsay R.
“I’ve had arthritis for the past 17 years. I started volunteering for the Arthritis Foundation this year. It feels really zen to be able to use my free time to help other people who are just beginning their journey with arthritis. I hope to show them that happy days can be here again!”
“I had my knee replaced this year during my senior year in high school. My goal was to be able to literally walk at graduation in June… and I did!! My physical therapist was awesome at getting me there.” Julie W.
“I lost the last 12 pounds I needed to get to my target weight. Boy, did it make me feel better. Not just my body and my arthritis, but my spirits, too.” Susan K.
Take the next steps:
Keep those winnable moments coming in 2013 and beyond. Set your wellness targets and achieve your goals. The Arthritis Foundation's Resource Page has some tools to get you started.
Volunteer Jane Johnson’s in-office volunteerism helps people with arthritis get the information they need.
Volunteerism is a part of Jane Johnson’s soul. Much of her week is spent donating her time to community organizations, whether it’s the Arthritis Foundation, the Denver Art Museum, Project Warmth or Denver Community Knitting.
As a volunteer for the Arthritis Foundation, Great West Region’s Denver office, she has spent the past four years updating thousands of member and constituent records. It’s a job she has performed with great precision and care, for she knows the value that the Arthritis Foundation gains by understanding the needs, connections and histories of those with arthritis.
Name: Jane Johnson
Location: Denver, Colorado
Type of Arthritis: I have osteoarthritis in my right knee.
What is the story of your diagnosis?
I was only recently diagnosed with osteoarthritis in the fall of 2012 at age 66.
How did you first get connected with the Arthritis Foundation?
I was looking for new volunteer opportunities that involved computer work, found the Arthritis Foundation and began volunteering in 2009.
How have you been involved with the AF as a volunteer over the years?
I’ve been doing data entry projects with the Arthritis Foundation since the beginning of my volunteer work here. I think it is valuable work because data entry and management is the way we communicate with members, constituents and those who inquire for information. Most people don’t want to do data entry and want to do more glamorous projects.
I’ve touched countless records over the years to update them and clean up the data. Now I’m working on projects across all eight states of the Great West Region. In general, it takes me five to six minutes to update each member’s record and I volunteer about 140 hours at the Arthritis Foundation ever year. I figure that this means I’ve worked on thousands of records over the years.
What makes a good volunteer?
The only difference between a volunteer and a paid staff person is a paycheck. Volunteers should take their role and commitment just as seriously as a paid staff person. They are counting on you.
Appreciation is the wage of the volunteer – that’s your paycheck. It’s nice that everyone here at the Arthritis Foundation always says thank you.
The Arthritis Foundation considers itself a volunteer-driven organization. Why do you think this is so important?
Volunteers free up professional staff members to do the really important work. We allow staff members to concentrate on work towards the Arthritis Foundation’s mission.
Those volunteers that do outreach for the Arthritis Foundation through advocacy, health fairs and more are so vital. They act as the face of the Foundation to the community.
What are some of your favorite parts of the Arthritis Foundation volunteer experiences?
I like learning systems and how they work, such as data management software.
It’s also interesting to work on the data entry from the Region’s juvenile arthritis camps to see how families are impacted and the range of ages of children diagnosed with arthritis.
Also, doing this work is a good way to keep the older mind agile and learning new things.
Was there ever another Arthritis Foundation volunteer that impacted your life?
The fortitude of some of the volunteers is incredible. There are many volunteers that are severely impacted by arthritis and still so committed. People don’t let their disabilities hinder their volunteerism. There are those people who say “I can’t do that” and those that have the “can do” attitude. Arthritis Foundation volunteers are the “can do” type.
For those readers out there who may have hesitations about volunteering for the first time, what would you say to encourage them?
You don’t know what you’re missing. There is joy in giving of yourself.
Find out more:
You can find Jane volunteering at the Arthritis Foundation, Great West Region’s Denver office on Mondays from 8:30 a.m. to 11:30 a.m..
Inquire about Arthritis Foundation volunteer opportunities closest to you.
Ultrasound is transforming the way juvenile arthritis is diagnosed and treated, making evaluation and therapy faster and more accurate.
Understanding the current state of a patient’s joints affected by arthritis has always been a vital need for physicians in order to treat arthritis. The use of ultrasound as a diagnostic tool is proving to be a fast, easy, cost-effective way to better evaluate and treat joints affected by arthritis.
Conventionally, doctors evaluate arthritis joint inflammation manually by using their fingers or with a needle to take a sample of joint fluid. With an ultrasound machine, they instantly have a clear picture of the affected joints and tendons while they are in motion. This leads to less need for X-rays, MRIs and other testing.
Ultrasound has been used by physicians as a diagnostic tool for many other medical conditions for decades. The use of the technology on patients with arthritis is more recent, steadily gaining utilization by rheumatologists in the past decade and by pediatric rheumatologists in more recent years.
Nanci Rascoff, MD, MPH is a Pediatric Rheumatology Fellow at the University of Washington and Seattle Children’s Hospital in Seattle, Washington. Dr. Rascoff was funded as a clinical fellow by the Arthritis Foundation in 2011. As part of her work, Dr. Rascoff is examining the benefits of ultrasound as a diagnostic tool for juvenile arthritis. AFeatures sat down with Dr. Rascoff to find out more about her work.
Ultrasound’s Use for Juvenile Arthritis
“Currently, in addition to the clinical history and exam, MRI is sometimes used for diagnostic purposes,” Dr. Rascoff states. “Ultrasound is emerging as an equally beneficial tool – with some key advantages. It is painless, and does not require sedation. It is done in real-time, and does not require scheduling. Ultrasound is a low cost, and reproducible tool. And patients love it! Bringing ultrasound into our clinic has been exciting for patients and families, and the opportunity for teaching in the clinic using ultrasound is tremendous.”
What Ultrasound can Determine that Other Tests Cannot
Dr. Rascoff continues, “Evidence suggests that ultrasound can detect clinically undetectable synovitis. In other words, ultrasound may help find active arthritis that could be missed by physical exam alone. While sometimes it may be easy to tell if a knee is swollen, warm, and doesn’t move well – things are not always so clear. That’s where ultrasound can help. It can serve as the rheumatologist’s ‘extra stethoscope’ – a tool to help us identify what may really be going on underneath the surface. Ultrasound doesn’t stop there though – in addition to joints, it can help us look at tendons, and studies suggest it can help identify erosions of the bone seven times earlier than X-rays can.”
Ultrasound’s Use in the Ongoing Care of Patients with Juvenile Arthritis
We feel that ultrasound over time will become an invaluable part of ongoing care for our patients,” Dr. Rascoff states. “While many children are able to achieve remission of disease, unfortunately, at least 50% are unable to successfully continue off medications for more than two years without a flare, and they remain on multiple combinations of medications for many years. Crucial to improving effective treatment and disease outcomes in children with JIA is the ability to determine which patients have smoldering disease undetected by usual clinical exam and require continuing/more treatment; and conversely, which patients can safely discontinue medications without impending flare of disease. Our current research investigates the value of ultrasound, and asks whether it might help us understand a little more about how and when flares of arthritis occur.”
The Benefits of Utilizing Ultrasound for Joint Injection Procedures
Dr. Rascoff says, “Ultrasound is increasingly being used in this setting, as evidence suggests that the customary “blind” approach to joint injections is inadequate. Ultrasound allows for direct visualization of the joint space, and delivery of intraarticular steroid within that space. That certainty of treatment delivery exactly where it is needed will lead directly to improved outcomes for our patients with juvenile idiopathic arthritis. Moreover, we are learning that secondary outcomes, such as procedure-related pain from injections, may also be minimized with the use of ultrasound.”
Dr. Rascoff’s work will continue through the Seattle Children’s Research Institute Center for Clinical and Translational Research and the researchers in the Division of Rheumatology, led by Dr. Carol Wallace. It is their goal to develop collaborations to identify potential markers within patients’ blood stream of disease activity and remission. Dr. Rascoff feels that ultrasound is an ideal research tool to expand these and other juvenile arthritis investigations.
For more Information:
You can find out more about juvenile arthritis and standard diagnostic tests on the Arthritis Foundation's juvenile arthritis resource page.
View a video of ultrasound in action on an adult rheumatoid arthritis patient.
The Arthritis Foundation bestowed one of its highest nationwide honors to Seattle based researcher, Anne Stevens, MD, PhD during its national meeting on December 7 in Colorado Springs, Colorado.
Dr. Anne Stevens is the recipient of the Clifford M. Clarke Science Award. This award was established in honor of Mr. Clarke to recognize his dedication and long-standing commitment to research during his tenure as President of the Arthritis Foundation.
This distinction is given to a senior investigator with an application score in the “excellent” range or better (1.0—2.0). The application scores are determined through the Arthritis Foundation’s National Peer Review Process. Anne Stevens, MD, PhD was selected as the 2012 recipient of the award for her project entitled Immune Response to Oral Pathogens in Juvenile Idiopathic Arthritis, receiving a score of 1.20.
Dr. Stevens was also a recipient of an Arthritis Foundation Arthritis Investigator Award from 2005 to 2009. The project title was Maternal Microchimerism in pediatric systemic lupus erythematosus.
“We were very pleased to receive the news about the Clifford M. Clarke Science Award being given to Dr. Anne Stevens,” said Scott Weaver, president and CEO of the Arthritis Foundation, Great West Region. “In addition to being a very dedicated volunteer and supporter of the Arthritis Foundation, Dr. Stevens has distinguished herself and her colleagues through her research and clinical work in Pediatric Rheumatology. We couldn’t be more thrilled by this recognition of her work.”
Dr. Stevens is the Program Director, Rheumatology Education at Seattle Children’s. She is an Associate Professor at the Center for Immunity and Immunotherapies. Her current research focus area is on the role of maternal microchimerism and Tlymphocyte regulation in children with systemic lupus erythematosus. In addition, her clinical interests include the role of maternal michrochimerism in pediatric scleroderma.
Dr. Stevens attended the Baylor College of Medicine in Houston and completed her residency in Pediatrics at Children’s Hospital Medical Center in Cincinnati, and her Fellowship in Pediatric Rheumatology at the University of Washington, Seattle. She is Board Certified in Pediatrics and Pediatric Rheumatology.
The Arthritis Foundation is pleased to announce the launch of our newly redesigned website, www.arthritis.org. The enhanced website makes it easier to learn more about arthritis, provides useful tools for disease management, find localized programs and services to benefit you and is mobile-friendly. Visit the new website at www.arthritis.org
A great new season of local Arthritis Walks is on the way! Find your local Arthritis Walk event and sign-up or form your team today! When you do, you’ll become part of a nationwide movement to make more people aware of the impact of arthritis and rally support towards the cause.
The Sun Valley Dirt Rally is a charity cycling event that takes place in Sun Valley, Idaho. The event features beautiful forest-service roads in the Salmon-Challis and Sawtooth Forest Districts. Each day’s route of roughly 50-miles takes place on paved and hard-packed dirt surfaces perfect for hybrid, cyclocross, and hard-tail mountain bikes. This event is fully-supported with rest stops, mechanical support, great food, and beautiful scenery. The Sun Valley Dirt Rally takes places June 29-30, 2013.
Discover more about the Sun Valley Dirt Rally.
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