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AFeatures
News for friends of the Arthritis Foundation, Great West Region
June 2012

 

Articles This Issue

Explaining the Pain: Finding a voice to share the physical, emotional and financial pain of arthritis
Two Oregon women master ways to provide arthritis perspective.  Find out how.

Funding Research for a Better Tomorrow
Researcher Dr. Anne Stevens works to get to the root of the connection between JIA and gum disease. Read more.

Making Time for Better Health
Janelle's tale of living with RA and how attending an Arthritis Foundation program changed her outlook on life. Learn more.

Why I Volunteer...
Brett Cook's approach of "attitude is everything" drives his volunteerism and life with JRA. Hear his story.

Summertime, and the Living Can be Easy.
A lifelong gardener with arthritis shares her insights in this review of the valuable tools and adaptive products of the Arthritis Foundation's Ease-of-Use Program. Read the article here.

Letting Go of the Shame
Seventeen year-old Maggie Yaddof reflects on her rheumatoid arthritis diagnosis and the emotional, life-changing experience as an Arthritis Walk Grand Marshal. Find out more.

Foundation Facts

Jingle in July!

About the Arthritis Foundation, Great West Region
A Note from Scott Weaver, CEO

Get Connected

 


 

Explaining the Pain: Finding a voice to share the physical, emotional and financial pain of arthritis

Two Oregon women master ways to provide arthritis perspective


How do you explain arthritis?

How do you get friends, family members or coworkers to understand the ups and downs of arthritis, how the pain might be severe one moment and lacking the next, how the side effects of your medications leave you feeling woozy or how the fatigue might make it hard to get out of bed in the morning?

This is a challenge that those with arthritis often face. The Arthritis Foundation advocacy program can help. This program gives people with arthritis and their loved ones the tools to make clarifying statements about life with arthritis. It guides them with ways to make their symptoms, challenges and story understandable to others. Once they have these skills, the advocacy program provides these “advocates” with opportunities to share their story for the public good – whether it is with school classmates, through local tv or radio opportunities or with legislators.

For 17 year-old Oregonian Mikaela Farasyn, advocacy didn’t start easily. Mikaela didn’t want to tell people about her diagnosis of juvenile arthritis at the age of 14. “I was embarrassed at first by having to explain to people the things I couldn’t do anymore, like hand-stands in dance class,” she says.

Megan Helzerman was her own advocate out of necessity before becoming a part of the Arthritis Foundation advocacy program. She was faced with exorbitant out-of-pocket costs for her inflammatory arthritis medications because a health insurance specialty-tier medication policy.

Megan (pictured above) had to find her voice quickly and explain to her Oregon-based health insurance company how vital her arthritis medications were. These were the medications that would allow her to be active – to work, hike, cycle and ski. Without the medications, she would have flu-like fatigue and simple activities like putting on her socks in the morning would cause intense, tear-inducing pain. All of these symptoms are invisible from outside observation.

“Arthritis is a disease that is misunderstood a lot because it’s a hidden disease and it’s hard to explain,” she says.

Once both Mikaela and Megan were connected with the Arthritis Foundation, they were given deeper resources and better tools to advocate for themselves and others.

Through these advocacy resources, Mikaela was shocked to learn of the amount of adults and other kids like her affected by arthritis in the United States.

“Fifty million people… that’s not just a problem, it’s an epidemic,” she says. “It’s so important to open the eyes of people about the impact of arthritis so there is more research, advocacy and programs to help people.”

“I knew that advocacy wasn’t just about me, it was about changing the system,” Megan adds. “I realized that it was important for me to talk about my arthritis more and to share what it’s like. Being an advocate for the Arthritis Foundation gave me those opportunities.”

But getting people to understand the importance of arthritis advocacy can be challenging for both Megan and Mikaela.

“It’s hard to find the perfect words to put people in my shoes and give them a sense of life with arthritis,” Mikaela says. (pictured at right with Congressman Greg Walden).

Eventually, both women found effective ways to describe how arthritis affects everyday chores and activities. They also both learned how to speak out in public forums and with legislators about their arthritis through the Arthritis Foundation advocacy program.

But because of advocate opportunities like speaking to legislators, Megan feels that the general public’s definition of the word advocacy is often misconstrued and intimidating.

“People imagine advocacy as involving protestors, people marching on the Capitol, or professional lobbyists. They think that they would have to have powerful connections with elected officials and people with influence. It’s not about that at all. Advocacy can be just about informing everyday people, or talking to a friend about what you’re going through.”

“Advocacy is something anyone can do. It doesn’t take a lot of time. The Arthritis Foundation’s program is accessible to anyone and can make a big impact,” she continues.

Both women recognize the powerful value of advocates to shape what’s ahead in healthcare and the public’s understanding of arthritis.

“Advocacy makes me feel like I’m making a change and helping the future,” Mikaela states. “Using your voice brings change and awareness, and that’s exactly what arthritis needs.”

Megan concludes, “If we don’t share the challenges we face, nothing will be done about it.”

To find out more about becoming an Arthritis Foundation advocate, go to: www.arthritis.org/advocacy

 

Ways to Get Involved in Advocacy

There are a range of current arthritis advocacy issues the Arthritis Foundation could use your help with. Find out more and tell us your own advocacy story.
•    Learn more about the AF’s advocacy priorities
•    Sign up as an e-advocate
•    Become an Ambassador
•    Learn more about regional public policy volunteer opportunities


 

Funding Research for a Better Tomorrow

Researcher Dr. Anne Stevens works to get to the root of the connection between JIA and gum disease.

From her lab at Seattle Children’s Hospital, Anne Stevens, MD, PhD is working to find a link between juvenile idiopathic arthritis (JIA) and periodontitis/gingivitis, also known as gum disease.

Through funding from a two year grant from the Arthritis Foundation, Dr. Stevens will be testing the hypothesis that children’s exposure to a certain bacteria involved with periodontics/gingivitis triggers arthritis in patients with JIA.

“Most teens have gingivitis; it is a frequent problem. Through this study we hope to see if the inflammation in the mouth from gingivitis triggers inflammation in the joints in kids with JIA,” she says. “This relationship has never been studied before in children.”

“There is a fair amount of literature that shows a potential link between rheumatoid arthritis (RA) and periodontitis and gingivitis. The epidemiological data suggests that the bacteria involved in these gum diseases, Porphyromonas gingivalis, may produce a protein that RA patients react to,” says Dr. Stevens.  “We want to investigate if this same reaction happens in kids with JIA.”

She continues, “When there is an infection in the mouth, such as gingivitis, our immune systems respond to create antibodies to fight the infection.  These antibodies recognize proteins changed by inflammation called cyclic citrullinated peptides (CCP).”  

“We also see that patients with the most severe cases of JIA and RA have high levels of CCP antibodies,” she says. “The study will allow us to measure the levels of CCP antibodies in children with JIA and see if those antibodies also bind to the P. gingivalis bacterial proteins.  We can then evaluate the association between these levels and clinically assessed JIA disease activity.”

Now in year one of the two year study, Dr. Stevens feels that the study is proceeding on course. The first year of the study involves the recruitment of 100 JIA patients and 50 dental patients.
 
Dr. Stevens even has her sights set on the next possible funded project. “The next step in the process would be to design a study to see if treating gingivitis can help kids with arthritis. We hope to get National Institutes of Health funding for this interventional study,” she says.

To learn more about the latest Arthritis Foundation funded research projects, go to:
http://www.arthritis.org/research.php


 

Making Time for Better Health

Janelle’s tale of living with RA and how attending an Arthritis Foundation program changed her outlook on life.

As a busy working mom in her mid-thirties, Janelle Bergquist is always on the move. A rapid pace is her status quo, whether she’s training for a triathlon or investing her free time toward volunteering for organizations like the Arthritis Foundation.

When Janelle was diagnosed with rheumatoid arthritis (RA) at age 26, she didn’t allow it to slow her down. She found ways to adapt and to try to achieve a new status quo. She felt like she could manage RA on her own.

“I remember feeling young and invulnerable,” she says. “I didn’t really get that arthritis was a chronic disease that wouldn’t go away and I never thought of the disease past a few months of my meds.”

Janelle continues, “I never considered attending an Arthritis Foundation program because I felt healthy inside.”

It’s a story that the staff of the Arthritis Foundation hear often when providing outreach and education to those with arthritis. “People lead busy lives these days. They get the diagnosis of arthritis and read a brochure about it at the doctor’s office or find some information online… but don’t have time to invest in learning much more than that,” says Lisa Fall, Chief Mission Officer for the Arthritis Foundation, Great West Region. “Our challenge is to make sure people know of the benefits of coming to an Arthritis Foundation program, so they make the time in their schedule to attend.”

Janelle concurs, “Once I had a baby, I realized that I wanted to learn more about RA to make sure I better understood the likelihood of her developing symptoms as well. I found an Arthritis Foundation RA Education Forum in Denver and attended for the first time.”

“It was an incredible sense of community to attend my first program to see other people in their thirties dealing with arthritis. At my infusion or rheumatology appointments I was used to being the far youngest person in the room with RA, by at least 20 years.”

She continues, “The education sessions gave me a fresh outlook and hope about my meds and the possibility of medications for the future. I gained a better understanding of the base science of how RA and medications affect the body. The question and answer period with the panelists was tremendous. It helped me think of new questions to ask my doctor and made me realize I had a limited understanding of how I could manage my disease… until now.”

Having seen the effectiveness of arthritis education, Janelle now encourages all those with arthritis to attend Arthritis Foundation educational or exercise programs. “I know that people often think that they already know all they need to know about arthritis, that they can’t fit a program into their schedule or that they are feeling fine at the moment so they don’t need to attend a program… but you need to make the commitment to attend at least one program. The education program I attended made more of a positive impact on my RA than anything else in the past three years. I left feeling elated and it gave me new hope for the future of expanding my family.”

Janelle concludes, “These programs can be a life changing experience. Why not attend? Even if you learn just one thing, it can make a big difference.”

Contact the Arthritis Foundation to start making time for your better health. Whether it’s the latest brochures, walking or drug guides, research updates, lists of local educational forums, or aquatics, exercise or tai chi programs, the Arthritis Foundation can get you connected to the information you need.

 

More Tales from the Field

It’s not just the Arthritis Foundation’s educational forums that have stories of success like Janelle’s. Here’s a sampling of stories from recent Arthritis Foundation Aquatic and Exercise programs, as told by the instructors.

From the Helena Senior Center’s Arthritis Foundation Exercise Program
•    “A few weeks ago Minnie told me how she was walking up her front four steps and saw a piece of paper on the bottom step. When she went to retrieve it she lost her balance and started to walk down the stairs backward. She said, "I just knew I was going to fall but when I got to the bottom I stayed upright and strong. Our exercises come in handy." She had a big smile as she hugged me.

•    “Irene took a really bad fall this winter sending her to the emergency room. She had a lot of bruising but no broken bones. The emergency doctor was really stunned that she didn't break anything. Irene said, "I exercise a lot." Irene has been in our Arthritis Foundation Exercise Program group for almost the full 10 years I have been leading it.”
 
From the Rosetta Assisted Living Arthritis Foundation Exercise Program
•    “Mary came in all happy and smiles because she was coming to exercise class again. When I asked what had her so happy she said, "My neck doesn't hurt any more. I exercise!" She was in a good amount of pain the first few times she came to class.”


 

Why I Volunteer…

Brett Cook’s approach of “attitude is everything” drives his volunteerism and life with JRA

Brett Cook has been involved with the Arthritis Foundation for more than a decade. Diagnosed with Juvenile Rheumatoid Arthritis at the age of 18 months, Brett only remembers life with arthritis. Now as a Home Health Physical Therapist with Legacy Home Care, Brett strives to empower and better enable people to be more physically active, particularly those with arthritis. Brett embodies his mantra of “attitude is everything” when it comes to living with arthritis and volunteering to help others.  

Name:    
Brett Cook, MPT

Location:    
Draper, UT

Type of Arthritis:    
Juvenile Rheumatoid Arthritis (JRA)

Age of Diagnosis:    
18 months old

What were the symptoms leading to your diagnosis?

I was told by my mother that I never slept well as a baby. She always felt that something was never right with me and I had a bunch of vague symptoms from an early age. Then at 18 months of age I had big bulges that appeared on my shins on my right and left legs. Soon after I had my first surgery and they realized I needed to see a rheumatologist because I had JRA.

What have been the ups and downs since your diagnosis?    
Generally, I always had aches and pains, morning stiffness and swelling in my joints. I had two big flare-ups of my JRA when I was 11 and 12 years old. During these times, it was the sickest I had ever been. I couldn’t even get out of bed in the morning, my symptoms were that bad. My long-term joint problems and joint degradation started then as I was on heavy doses of steroids. My disease went quiet in my teenage years and I was even able to get off my medications. My JRA came back in my mid-twenties. In college I started having surgeries and having joints replaced. Recently I’ve been very good and my disease has been really quiet. Whichever of my joints have been destroyed is still what affects me the most and gives me the most problems day to day.

How did you first get connected to the Arthritis Foundation?
    
When I was in school to become a Physical Therapist, a panel organized by the Arthritis Foundation presented to our class about the effects of arthritis. One of the panelists, Mary, worked for the Salt Lake City office (and is still there today). It was very enlightening for me to suddenly hear about the Arthritis Foundation. Later on, around the year 2000, Mary reached out to me to encourage me to get involved with the Arthritis Foundation.

What were some of the ways the Arthritis Foundation supported and helped you?

I became a member of the Foundation and started receiving Arthritis Today magazine and also started getting literature and brochures about arthritis and treatments from the local office. I took part in Arthritis Foundation Aquatics and Self-Help programs. Later, I became an instructor and started leading the Arthritis Foundation Aquatics, Self-Help and Exercise programs. From there I eventually became a trainer so that I could teach people how to be instructors for Arthritis Foundation programs.

How have you been involved with the Arthritis Foundation as a volunteer over the years?
I was an instructor and trainer for Arthritis Foundation programs. Then I started helping with events and with the local Juvenile Arthritis Family Day. I was involved with the Arthritis Walk for a few years then I became the Chair of the Walk and progressed through that into other fundraising events like the local Dinner Gala and was co-chair of a Golf Tournament. I became a member of the Board of Directors. Around that same time I became involved with Arthritis Foundation advocacy. I went to Washington D.C. to raise awareness of arthritis and ask my local Senators to sponsor arthritis legislation. Now I also serve as an Arthritis Ambassador and work to recruit other advocates to help with the advocacy efforts.

What makes a good volunteer?
What I’ve noticed in other volunteers that makes a difference is that they must have a passion. They either have arthritis or know someone with arthritis and this gives them ownership of their volunteerism and a better connection. Another important skill is for the volunteer to follow-through on things. They should always follow-up and do what they say they are going to do… whether it’s finishing up a task for the Arthritis Walk or consistently being an Exercise program instructor.

A good volunteer should always be cheerful, enthusiastic and motivating. People always comment on my attitude and positivity. We all have limitations, whether you have arthritis or not, but attitude makes all the difference.  

The Arthritis Foundation considers itself a volunteer driven organization. Why do you think this is so important?
It’s important because you know that the people that are helping are doing it for the right reasons. Volunteers are involved at every level, all the way up to the Board of Directors. Volunteers set the tone of the organization. You always know where the heart of the organization is because of the volunteer involvement.

What are some of your favorite Arthritis Foundation volunteer experiences?
Being a National Honoree for the Arthritis Walk was so incredible. I was able to travel to the East coast and attend Walks, do media interviews and it gave me the opportunity to meet that year’s child Honoree, Maggie Mueller (pictured above with Brett). She is such an incredible young woman.

Another favorite experience is being an advocate and traveling to Washington D.C. I learned how to ask for government funding for arthritis programs, how to work with government, learned the political process and how to tell my own story in new ways.

For those readers who may have hesitations about volunteering for the first time, what would you say to encourage them to get involved?
There is no better cause than the Arthritis Foundation. Don’t be afraid to get started, they make it easy to help. Whatever you want to do, there’s a place for you. No matter how much time you want to commit, there’s always something for you.

Contact your local Arthritis Foundation office to find out about the latest volunteer opportunities.


 

Summertime, and the Living Can be Easy

A lifelong gardener with arthritis shares her insights in this review of the valuable tools and adaptive products of the Arthritis Foundation's Ease-of-Use Program.

Opening a jar of coffee, dicing vegetables for a salad or hand-writing letters to friends can be difficult when facing the joint pain, swelling and mobility limitations that can come with arthritis.

The Arthritis Foundation’s Ease-of-Use program seeks to help alleviate problems like these. The Ease-of-Use program provides consumers with an ever-expanding list of arthritis-friendly products for home, work and play. Examples of some of these products currently include wide-grip gel pens, easy grip ergonomic chef knives, back-friendly and raised memory foam mattresses and light-weight maneuverable vacuum cleaners.

Products stamped with the Ease-of-Use logo have been tested and proven to make everyday tasks easier for people with physical limitations. The Arthritis Foundation partners with scientists at the Georgia Tech Research Institute in Atlanta, Georgia, who put each product through rigorous tests to determine its user-friendliness for those with arthritis.

Washington resident Ruth Adams was diagnosed with rheumatoid arthritis at age 34. Gardening has been a part of her life for as long as she remembers, but arthritis jeopardized her ability to actively garden over the years.

Ruth, now 81 years old, recognized the need for adaptive garden tools to meet the needs of those with physical limitations. Ruth launched the website Garden at Ease Shops (www.gardenateaseshops.com) to meet these needs. The site provides ways for consumers to purchase ergonomic, adaptive gardening tools.

“I started looking for tools that I could use, lightweight and ergonomic tools, to get me back out in the garden,” she says.

Ruth’s list of “must have” tools for the gardener with arthritis includes ratchet pruners and mini and maxi loppers. “These make it possible for someone like me with no strength to cut two inch limbs,” she says.

Once wheelchair bound, and having undergone dozens of surgeries over the years, Ruth is now more mobile and able to garden at her very best. She attributes her health improvement to staying active and improved arthritis medications. Ruth even uses a push mower to maintain her lawn now for the first time in her life.

Ruth also offers gardening advice through the BLOG on her website.

“For those with arthritis that love to garden but feel overwhelmed at the idea of managing their whole yard, I recommend to start small. Pick one spot in your garden or one pot. Clean it up, work with it, and maintain it. Make it look amazing and what you want. You’ll get such a sense of accomplishment and you won’t notice the other unmanaged spots in your garden as much. You will feel better, I promise.”

See the catalog of Arthritis Foundation Ease-of-Use products and find out more about the Arthritis Foundation Ease-of-Use testing process.


 

Letting Go of the Shame

Seventeen year-old Maggie Yaddof reflects on her rheumatoid arthritis diagnosis and the emotional, life-changing experience as an Arthritis Walk Grand Marshal.

What started out as a class assignment turned into so much more for Maggie Yaddof.

Having been diagnosed with rheumatoid arthritis (RA) at the age of 16, Maggie was affected by joint pain and inflammation in her jaw, feet, hands and wrists on a daily basis.

“Despite all my physical symptoms, my biggest challenge was getting people to understand,” she says. “In high school you have expectations to do a lot. Some things you just can’t do on certain days with RA, and explaining it to people can be hard.”

When it came time to develop her high school senior project, Maggie turned to a topic she knew best… arthritis. “I reached out to the Arthritis Foundation in Washington to find out more about arthritis and to offer my help to fulfill my senior project community service hour needs. Next thing I knew I was sitting in an Arthritis Walk meeting at the Arthritis Foundation. I’ll never forget that first meeting, because I was blown away to be sitting in the same room with people of all ages affected by arthritis,” she says. “It was one of the best things I have experienced, to be able to meet other people with arthritis and see how the disease affects all genders, ages… everybody.”

Maggie’s involvement with the Arthritis Foundation quickly amplified and she was helping out more and more with the planning of the Vancouver/Portland Arthritis Walk. “Janet from the Arthritis Foundation office could tell I was comfortable talking to people and telling my story, and knew how important arthritis awareness was to me. She invited me to become the Grand Marshal for the local Arthritis Walk. I was honored!”

As part of her duties as one of the Arthritis Walk Grand Marshals, Maggie found herself out in the community, on stages and being interviewed by local newspapers - all to promote the Arthritis Walk and arthritis awareness.

“I learned a lot about myself by being a Grand Marshal,” she says. “I’ve seen how getting up and saying something can make a positive impact on someone, and how my voice can really make a difference!”

“It’s been an emotional journey for me. One of my favorite moments was towards the end of the day at the Walk. I had finished my speech to all the people there (which I finished without crying!). In my speech, I read a poem I wrote about shame. The theme of the poem was that people with arthritis can often feel ashamed of having the disease, like it’s their fault. Obviously it’s not. People don’t need to be ashamed, they need to let go of the shame and be who they are. After the Walk, this older woman came up to me with tears in her eyes. She told me that she had felt ashamed because of her arthritis her entire life, but had never said anything to anyone about it. She felt a huge release to be able to finally say out loud to me that she had felt this shame, but now realized she didn’t have to. It made me feel proud to be able to help even just one person like that.”

As supportive as Maggie has been to so many others, she has had her own support system throughout it all. “I’ve always been especially fortunate to have a supportive family, friends and church family. Through my diagnosis and involvement in the Walk I’ve learned to appreciate them even more. When I was on crutches or when I wasn’t very self-sufficient everyone was always there to help me.”

Also vitally important to Maggie was her friendship with Tara Manriquez, the co-Grand Marshal for the Vancouver/Portland Arthritis Walk. “Tara was with me, side by side, like a mentor through the whole process. She was a great resource and support for me and continues to have a big impact on my life.”

Maggie’s volunteerism with the Arthritis Foundation will be continuing, even though she’s headed to college this fall at the University of Washington. “I know there is an Arthritis Foundation office in Seattle, so I plan on knocking on their door to get involved there now, too!”

Want to hear more about Maggie’s perspective through her poems? You can read them here.


 

Foundation Facts

* Current research suggests that active duty soldiers and veterans have twice the rate of osteoarthritis when compared to non-military populations.

* This spring, 3,105 people attended the nine Arthritis Walks held across the Great West Region, a 32% increases over 2011!

 


Jingle in July!

You can win an iPad or Kindle Fire by joining your local Jingle Bell Run/Walk and fundraising this summer!

Find out how.

 


 

About the Arthritis Foundation, Great West Region

A Note from Scott Weaver, CEO


Thanks for taking the time to read this inaugural issue of AFeatures, the Arthritis Foundation, Great West Region’s e-newsletter.

The Great West Region serves the states of Alaska, Colorado, Idaho, Montana, Oregon, Utah, Washington and Wyoming through seven office locations, 36 staff members and our hundreds of dedicated volunteers. Our goal is to provide comprehensive programs and services for the over four million adults and 21,000 children affected by arthritis in our Region.

The aim of this publication is to provide you with a tour of the many stories across the Region of those living with arthritis and the people that seek to help them. We hope you enjoy the ride!

PS....Speaking of rides, I invite you to read about an incredibly inspiring athlete, Steve Cardin. Steve is the 2012 Amgen People's Coast Classic Honoree and rode the tour last year after having been recently diagnosed with Ehlers-Danlos Syndrome (EDS). Following his diagnosis, he has been working to raise awareness about the disease through involvement in support groups and launching an awareness campaign. Cycling keeps Steve fit and helps ease the pain of EDS. I'd like to introduce you to Steve and encourage you to join us this year at the Amgen People's Coast Classic.


 

Get Connected

Find your local Arthritis Foundation office to get connected to programs, events and volunteer opportunities.

Feedback or ideas for AFeatures future content? E-mail wbalmer@arthritis.org

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