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AFeatures 
News for friends of the Arthritis Foundation, Great West Region
Fall 2013

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Articles This Issue

Trends in Orthopedic Surgery and Joint Replacements
A leading orthopedic surgeon shares how new, revolutionary technologies will benefit patients. Discover more.

Why I Volunteer
Donna Coy invites her friends and family to come along on her journey with arthritis. Read her story.

Arthritis Aid is just a Phone Call Away 
The new Great West Region telephone helpline serves as a comprehensive tool to get you the information you need. Learn about the resource.

More Americans Limited by Arthritis Pain
Nearly one in ten people say that joint pain impacts daily activity. Find out more. 

Research Priorities
A look at the Arthritis Foundation’s research priorities in three key areas. Learn more.

Get Ready for Jingle Bell Run/Walk!
The festive costumes are just one dynamic part of the Jingle Bell Run/Walks, the Arthritis Foundation’s fun, festive 5K holiday events. Find out more.

Finding Health Insurance to Meet Your Arthritis Needs
The importance of health insurance marketplaces for people with arthritis. Learn more.

Foundation Facts

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Trends in Orthopedic Surgery and Joint Replacements

A leading orthopedic surgeon shares how new, revolutionary technologies will benefit patients. 

 

Dr, MinerTodd Miner, MD foresees momentous, positive change for the future of orthopedic surgery and treatment.

Dr. Miner (pictured right) is an orthopedic surgeon at Colorado Joint Replacement in Denver, Colorado. He focuses on adult reconstructive work, particularly of the hip and knee.

He chose to specialize in orthopedic surgery after working in orthopedics as part of his medical school rotations. Dr. Miner was immediately impressed by the amount of impact that an orthopedic surgeon could have on a patient’s life.

He remarks, “Take the example of a person with a knee that is adversely affected by osteoarthritis. That damaged knee causes limitations in the person’s life. They may not be able to walk for long distances and shop at the grocery store, or take walks with a loved one. It may affect their ability to work.” He continues, “Orthopedic surgeons can fix that and improve mobility for a patient.”

“There are a lot of diseases where the medical specialists are just trying to modify symptoms. With orthopedics, we aim to fix the patients' ailments for the long run,” he remarks.

Miner quote“The speed and breadth of innovation in orthopedics is remarkable. The instruments and surgical techniques are regularly evolving.” He says, “In the course of my own career, I have seen significant advances in how we do hip and knee reconstruction. Things have improved dramatically.”

Dr. Miner continues, “We utilize smart tools, computer navigation and robotic instruments. We can now perform ligament balances that give us digital feedback about pressures within the knee, and we can use MRI or CT scans to create 3D models of the knee to determine where the defects are and pre-build a custom implant based on this data. It’s a very exciting time.”

As technologies continue to advance, Dr. Miner predicts that we will see patients experience faster healing times and reduced pain post-surgery, leading to improved, healthier recovery processes.

 “Through advancements in surgical techniques, joint replacement technologies and anesthetics, we will be able to increasingly spare the soft tissues of the muscles and ligaments during surgical procedures,” Dr. Miner says.

seminar“Advances in arthritis care now and in the future will include the use of biologic substances and cartilage cell replication and transplant techniques that hopefully can postpone or negate the need for joint replacement surgery in some patients,” he adds.

The advancements in orthopedic surgery and treatments will continue to progress through ongoing research projects. “There are hundreds, if not thousands, of research projects in the works around joint preservation and replacement,” Dr. Miner states.

The Arthritis Foundation seeks to continually educate those with arthritis about the latest trends in orthopedics. The Foundation’s local educational forums, informational brochures and website resources can serve as your guide to understanding orthopedics as it further evolves.


Find out more:

View this informative video to see Dr. Miner discuss the primary causes of hip and knee arthritis.

Dr. Miner is a part of Operation Walk Denver, the Colorado chapter of a global campaign dedicated to bringing hope to those in need of advanced surgical orthopedic treatments. As a volunteer in the program for over a decade, Dr. Miner and the team have now replaced over 1,100 arthritic hips and knees in the South American countries they have visited. Learn more about Operation Walk and its life-changing mission through this video story.

 


 

"Why I Volunteer..."

Donna Coy

Donna Coy invites her friends and family to come along on her journey with arthritis. 

Donna Coy’s remarkable arthritis experience has taught her many things… the importance of taking control, acceptance of her disease, the value of arthritis education, and the magnitude volunteerism can make on one’s self.

Through her commitment to volunteerism, particularly through her local Jingle Bell Run/Walk, Donna seeks to turn the challenges of her arthritis into a positive way for her friends and family to get involved.

volunteer
Name:
Donna Coy

Location: Bend, Oregon

How does arthritis affect your life?
I was diagnosed with rheumatoid arthritis (RA) at 24 years old. It was so bad when I was first diagnosed. I remember having to crawl to get into the bathtub… I was that sore. My mother also had RA, so I knew all the signs and symptoms.

My RA is all over my body. My hands are bad now. I am struggling to keep my knees and not have them replaced. I have been working hard through exercises to strengthen the muscles around my knees to reduce the pressure on them.

I’ve had my hip replaced twice, a total shoulder replacement and an elbow replacement. I’ve had all my metacarpals replaced (my knuckles).


How did you first get connected to the Arthritis Foundation?
Before I moved to Oregon, my rheumatologist wanted me to learn more about my arthritis. I was in denial when I was first diagnosed. I attended an in-patient program for people with arthritis that taught us about everything from treatments to exercises.

I started teaching an Arthritis Foundation class to others with arthritis. The goal was to connect people to rheumatologists, resources and educate them about all aspects of their arthritis.

Most importantly, a valuable lesson I learned and would share is that you need to take control of your arthritis and be able to make decisions about your health. You need to be a part of the decision making process alongside your physician. With having arthritis, you still have to live your life. So be it.

Coy quoteI got involved with the Jingle Bell Run/Walks in Iowa, and the last year before I moved, I was the chair of the event.

I moved to Bend in 2000 and found the Jingle Bell Run/Walk there. I was happy to get involved as a volunteer at the event. Over the years I’ve served in different roles on the planning committee, and I’ve even been the event’s Grand Marshal. I love being on the course at the Jingle Bell Run/Walk and ringing my bells and cheering for all the runners and walkers to motivate them to keep going.

I’ve gotten so many people in my life involved with the local Jingle Bell Run/Walk – my friends, family, my pastor and my church friends. Once I realized that arthritis was “my thing” I truly embraced the fact that I needed to support this cause. We need to get this disease taken care of! Part of that involves me asking people to come on this arthritis journey with me.


What are some of the ways that the Arthritis Foundation has supported you?
The Arthritis Foundation truly cares about people with arthritis. They think of the person with arthritis first and foremost. The Arthritis Foundation also educated me about juvenile arthritis and the great programs and education that they offer children and their families affected by arthritis.


Outside of Jingle Bell Run/Walk, have you been involved with other aspects of the Arthritis Foundation?
The Arthritis Foundation used to connect me with people who were considering joint replacement or other surgeries related to their arthritis. I would call them and guide them through the decision-making process around surgery – questions to ask and things to consider.

I attended the Arthritis Foundation Advocacy Summit in Washington DC for many years and also would attend American College of Rheumatology conferences to represent other patients with arthritis.


How are you currently involved with the Arthritis Foundation?
grand marshalThis year will mark my fourteenth Jingle Bell Run/Walk in Bend! I have a ball doing it.

I like to fill-in in any way needed for the Bend Jingle Bell Run/Walk. Whatever ways the event needs support, I can do it.

I talk about the event all year long. It is such a great time and so much fun! I’ll talk to anyone about the Bend Jingle Bell Run/Walk. I find volunteers from all over the community and have even been known to recruit people in parking lots… so watch out for me!!


What makes a good volunteer?
Arthritis Foundation volunteers do it for someone important in their life or because it’s their own thing and they have arthritis.

For me, I want my daughter to think of the happy times related to my arthritis, like the Jingle Bell Run/Walk. I don’t want her to think about my arthritis and only remember the tough times and the surgeries.


What is one of your favorite Arthritis Foundation volunteer experiences?
That feeling of accomplishment after the Jingle Bell Run/Walk is done is so memorable. When the last people have finished the race and it’s over and a success and people have had a great time – that feeling is all worth it.


Was there ever another Arthritis Foundation volunteer that impacted your life?
Leslie was an Arthritis Foundation volunteer that I met when I was in my late 20’s. She was 17 or 18 years old at that time, and had been diagnosed with juvenile arthritis since she was very young.

Despite how severely affected her body was by her arthritis, Leslie was going through her life so graciously. She was very upbeat and didn’t feel sorry for herself.

I remember thinking ‘If she can do it, so can I.’

That’s another thing about Arthritis Foundation volunteerism. It gives you the chance to meet others with arthritis. You can’t isolate yourself. It’s important to see how other people with arthritis are living their lives.


For those readers who have hesitations about volunteering for the first time, what would you say to encourage them?
Make sure you find a way to volunteer that is a fit for you. It’s supposed to be fun – whether your definition of fun is data entry or an event committee. The Arthritis Foundation has volunteer opportunities for all.


Find out more:

Discover your local Arthritis Foundation volunteer opportunities, and find out the location of your closest Jingle Bell Run/Walk.

 

 

 

 


 

Arthritis Aid is just a Phone Call Away

The new Great West Region telephone helpline serves as a comprehensive tool to get you the information you need. 

 

Since its very beginnings in 1948, the Arthritis Foundation has operated a telephone helpline to assist people diagnosed with arthritis and provide them with the arthritis resources and information they need. Last year alone, 1,071 callers reached out to the Arthritis Foundation, Great West Region through the helpline to request information on types of arthritis, medications, complementary therapies and local programs in their communities.

“There is always room for improvement in how we educate, inform and assist the people that call the Arthritis Foundation’s helpline,” says Lisa Fall, Chief Mission Office for the Arthritis Foundation, Great West Region. “We need to be able to consistently relay the latest resources that we offer, whether it is new program sites in the community or information on the Affordable Care Act as it relates to people with arthritis.”

In order to do this, the Arthritis Foundation, Great West Region is launching an enhanced, toll-free helpline in December, 2013. The centralized helpline will field calls from across the nine states of the Great West Region to one central resource hub. The new helpline will be led by Mary Haynes, a long-time Arthritis Foundation staff person with a wealth of knowledge about arthritis.

M HaynesMary (pictured right), who works from the Arthritis Foundation, Great West Region’s Salt Lake City office, has been employed by the Arthritis Foundation since 1976.

“If people have questions about arthritis, they should call our helpline. We have arthritis information that is up-to-date. There’s always someone who can provide callers with answers and one-on-one help about their arthritis issues,” Mary says. “Drug guides, local classes, various treatment brochures, information about lab tests, pamphlets on forms of arthritis – we offer it all.”

Mary continues, “I’ve been answering calls from people with arthritis for a few decades, but a lot of the questions that callers ask have stayed the same. People typically want specific information about rheumatoid arthritis (RA), osteoarthritis (OA) and other forms of rheumatic diseases. They also want to know how to find a list of local rheumatology experts.”

Callers don’t necessarily always realize the depth of information that the Arthritis Foundation provides, as Mary attests. “They may not know that we offer educational forums, or arthritis aquatics, exercise, tai chi or Walk with Ease classes in the community. People often don’t know that we have a website with lots of information on it. A lot of people don’t know the value of seeing a rheumatologist instead of a family physician for their arthritis issues.”

Mary’s value in staffing the arthritis helpline comes not only from her professional experience from working at the Arthritis Foundation for the past 37 years, but also from her own personal experience of living with arthritis. Mary has been diagnosed with RA, ankylosing spondylitis, spinal stenosis and OA. She’s had many medical procedures over the years related to her diagnoses, including a fusion of her right thumb, her left hip replaced, and bilateral knee replacements. Mary admits that her forms of arthritis have brought hardships over the years. She has countered these hardships with an active lifestyle including swimming, tennis and golf, and the power of positive thinking.

“Those people with a defeatist attitude usually have more trouble with their arthritis. In my experience, the people with the positive attitude, even when they have worse arthritis symptoms, cope better than the people with defeatist attitudes.” Mary continues, “You will always find complainers. The biggest complainers aren’t the people with the most severe arthritis. I’ve been coping with arthritis for 45 years and feel like I’ve been able to live a fairly normal life. You deal with it. You live with it. You move on.”

For those readers who may have hesitations about calling the Arthritis Foundation’s helpline for information, Mary offers this perspective, “It’s best to call us and get the information you need. Learning more will help you deal with the disease in ways you can’t imagine – physically and mentally.”

The Arthritis Foundation’s centralized helpline launches in a few weeks and can be accessed at that time from the Arthritis Foundation’s main toll-free number – (888) 391-9389. New voice prompts will immediately direct callers to the appropriate extension for the helpline.


Find out more:

Beyond of the Arthritis Foundation’s helpline at (888) 391-9389, an abundance of arthritis information and resources can be found on our website – www.arthritis.org.

 

 

 


 

More Americans Limited by Arthritis Pain

Nearly one in ten people say that joint pain impacts daily activity. 

crowdA government report from the Centers for Disease Control and Prevention (CDC) released recently found the number of adults with arthritis is rising by about 1 million people each year, and along with it, the debilitating impact of the disease. The report reaffirms previous predictions that cases of arthritis would rise rapidly with the aging of the population. However, the impact of arthritis on activity limitations is exceeding previous estimates, according to the Arthritis Foundation.

“The sharp rise in activity limitations is alarming,” says Arthritis Foundation President and CEO, Ann M. Palmer. “More people are hurting when they walk and climb the stairs, and they may be curbing activities they love due to severe pain and limited mobility caused by the disease. We must reverse this trend by investing more dollars in research to find a cure for arthritis and providing health intervention programs to help people be more active today.”

According to the CDC study published in the November 8 issue of Morbidity and Mortality Weekly Report, arthritis affects the daily activities of about 23 million adults, up from 21 million in 2009, and not far from the projection of 25 million that wasn’t expected until 2030.

The report also confirms the disease is common, impacting about 23 percent of the adult population. The 2013 report shows that the number of adults with doctor-diagnosed arthritis climbed from roughly 50 million to 53 million over the last three years. Arthritis also carries a heavy financial burden, costing the U.S. economy $128 billion annually.

Among the report’s findings from 2010-2012:

arthritis stats

“The number of U.S. adults with arthritis is increasing. This amounts to an average increase of approximately 2,400 individuals per day,” says Dr. Wayne H. Giles, Director of the Division of Population Health at the CDC. “Because arthritis occurs so often with other conditions like diabetes and heart disease, arthritis limitations may be interfering with the recommended management of those conditions, especially in regards to physical activity.”

The Arthritis Foundation is working to help address this ever-growing problem by advocating for policies and programs to help people get treatment and care, driving innovative research toward a cure, and providing information and programs to help people manage their disease. In addition, events such as the Arthritis Foundation Jingle Bell Run/Walk for Arthritis bring the community together each year to raise funds to fight and cure arthritis.

To learn more about the impact of arthritis and what you can do about it, visit www.arthritis.org/newsnov2013.

 

 


 

Research Priorities

A look at the Arthritis Foundation’s research priorities in three key areas. 

 

Juvenile Arthritis

researchOur Flagship Initiative in Juvenile Arthritis (JA) is our partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Through this partnership we are working to create a network of pediatric rheumatologists and a registry of children with JA - allowing researchers to identify and analyze differences and similarities between patients and their responses to treatment.

Already launched at 60 clinical research sites, the CARRA registry currently has 8,000 patients enrolled and we believe this Initiative will accomplish significant goals including a universal standard for care within the next five years, including:

  • Developing a better understanding of the effective use of existing drugs in children;
  • Finding key predictors of who is at risk for developing JA, based on genetics or environment; and
  • Developing therapies to slow or halt the progression of JA.

 

Rheumatoid Arthritis

The Arthritis Foundation’s research program in rheumatoid arthritis (RA) is focused on discovering and developing tools that will allow physicians to implement personalized treatment plans for individuals with RA.

More specifically, the goals of the Foundation’s RA research program include:

  • Identifying reliable genetic and environmental factors that may predict who gets RA;
  • Determining which drugs are most effective for specific patients based on how long they’ve had the disease, its progression, genetics, etc.; and
  • Developing strategies and treatments that will slow progression and inhibit long-term effects of the disease.

To help achieve these goals, the Foundation launched the Arthritis Internet Registry (AIR) as a cornerstone of its Rheumatoid Arthritis Flagship Research Initiative. Through this initiative, AIR will establish a solid database of information to guide researchers to newer and safer drug therapies for arthritis patients. We will also help physicians determine the best course of personalized care for every RA patient from the outset of their treatment.

 

Osteoarthritis

knee replacementOur strategic goal for osteoarthritis (OA) is to develop new interventions and treatments through OA research and the Anterior Cruciate Ligament (ACL) Intervention Initiative. We hope to discover disease-altering therapies to stop the disease in its tracks.

The goals of the Foundation’s OA research program and the ACL Intervention Initiative include:

  • Determining predictors and causes of OA;
  • Utilizing existing and advanced technologies to detect OA before its effects set in;
  • Identifying which individuals are at risk of developing OA;
  • Discovering and implementing new therapies to halt progression of the disease; and
  • Advancing research into new drug therapies.

To achieve these goals, we are investing in OA research projects ranging from the ACL Intervention Initiative, biomarker identification and studies to improve imaging techniques that allow physicians to identify changes in cartilage of an injured joint over time.

 

Find out more:

Read about the Arthritis Foundation's comprehensive research priorities and more on our research website.

 

 


 

Get Ready for Jingle Bell Run/Walk!

The festive costumes are just one dynamic part of the Jingle Bell Run/Walks, the Arthritis Foundation’s fun, festive 5K holiday events. 

JBRW costumes

 

The Jingle Bell Run/Walk season is here! Join thousands of other participants at one of the many Jingle Bell Run/Walks across the Great West Region in 2013.

The Jingle Bell Run/Walk is a holiday tradition in communities across the Region. Join other dedicated folks who tie jingle bells to their shoes and run or walk these fun, festive 5K courses. The Jingle Bell Run/Walks are designed to be a family-friendly event, with unique activities for all ages. Some events even welcome dogs.

One of the many ways that participants embrace the Jingle Bell Run/Walk theme is through creative costumes. View some of the outstanding Jingle Bell Run/Walk costumes from across the Great West Region’s 2012 events (picture at right), or view the National Jingle Bell Run/Walk costume gallery.

Funds raised support the Arthritis Foundation’s programs, services and research initiatives for those affected by arthritis.


Find out more:

Locate your local Jingle Bell Run/Walk and join the fun!

 

 

 

 

 


 

Finding Health Insurance to Meet Your Arthritis Needs

The importance of health insurance marketplaces for people with arthritis.


Having health insurance protects you and your family from large medical bills and helps you stay healthy. However, many Americans have been shut out of health insurance due to existing health conditions, such as arthritis, or the high cost of insurance. This leaves many people uninsured.

Beginning next year, most Americans will be required to carry health insurance. Starting October 1, 2013, people without health insurance can sign up for coverage through new health-insurance marketplaces run either by their state, the federal government or a combination of both. This offering is the centerpiece of the Affordable Care Act (ACA), passed into law in 2010. If you do not have insurance by March 31, 2014, you may be charged a fee.

marketplace toolkitSelecting health insurance can be a complicated decision, particularly for first time purchasers. The Arthritis Foundation is here to provide the resources you need to understand your coverage and benefits options so you can make a better-informed decision about your insurance options.

The Arthritis Foundation recently launched a Marketplace Toolkit, designed for individuals who do not currently have health insurance. The Arthritis Foundation Marketplace Toolkit has information and tools to help you understand your options and help you make the right decision.

Even if you have health insurance through an employer, Medicare, or Medicaid, this toolkit can still be a great resource to you. Many of the tools can help you learn more about the health insurance you already have. Other tools will be more helpful to people shopping for new insurance in the Marketplace.

Choosing insurance can be confusing, especially with the factors related to arthritis. Individuals with arthritis have to look at plans to make sure certain medicines, devices and surgeries are included. You may need coverage for joint replacement. You may need biologics. You may need physical therapy. When you choose a plan, you must consider many of these things.

The Arthritis Foundation is here to provide the resources you need to understand your coverage and benefits options so you can make a better informed decision about your insurance options.

To learn more about the Arthritis Foundation Marketplace Toolkit, visit www.arthritis.org/marketplace.

 

 


  

 

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Get Connected

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

Find out about all of our volunteer opportunities on our Volunteer Resource Page or fill out a volunteer application.

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

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