Arthritis Foundation Logo
Español ES
Your Local Area
Sign In
Popular Search
arthritis gout home ja
Suggested Content
Article
Rx for Access
Online resource that helps patients better understand health coverage options, choose the right coverage, manage the denial process and reduce health care costs.
Article
Do I Have Arthritis?
Think you may have arthritis? Learn about the four most common warning signs.
Article
Gout
Gout is an inflammatory type of arthritis that can come and go.
Arthritis Foundation Logo
  • About Arthritis
    Common Topics
    woman holding her wrist What Is Arthritis?

    Arthritis is not one disease. Learn about the different types of arthritis, how they differ and why it’s important.

    microbes Inflammation and the Immune System

    Body-wide inflammation is at the root of most chronic diseases — and you may have more control over it than you think.

    Patient talking with nurse Newly Diagnosed With Arthritis

    A new arthritis diagnosis can be overwhelming. These tips can help.

    • Understanding Arthritis
    • Arthritis Types
    • More About Arthritis
    • Where it Hurts
    • Related Conditions
  • Treatments
    Common Topics
    Woman holding shoulder Webinar: Touch Therapies for Pain Management

    Learn the evidence behind popular touch therapies for arthritis, including what to try and what to avoid, for how long and when.

    Managing Arthritis Care Costs

    Learn the basics about health care costs and financial tools available to you.

    Man with head in hands on bed Webinar: Arthritis Fatigue Causes and Solutions

    Learn the various causes of arthritis-related fatigue and strategies to combat weariness.

    • Treatment Plan
    • Drug Guide
    • Joint Surgery
    • Complementary Therapies
    • Insurance Management
  • Healthy Living
    Common Topics
    Woman with upset stomach Microbiome, Gut Health & Arthritis

    Microbiome, microbes, microorganisms – these terms may be confusing, but the types of bacteria living in and on our bodies can impact arthritis. Learn what helps or harms the microbiome and the health of your gut and discover dietary changes that can make a difference. This episode was originally released on January 19, 2021.

    man exercising Stairs Workout Demo

    Strengthen your leg muscles and improve your stability to make going up and down stairs safer and easier.

    woman consoling another Arthritis and Mental Health

    Learn about the connection between arthritis, depression and anxiety and how these conditions can make your arthritis worse.

    • Ease of Use Products
    • Managing Pain
    • Recipes & Nutrition
    • Physical Activity
    • Emotional Well-being
    • Daily Living
    • Family & Relationships
  • Juvenile Arthritis
    Common Topics
    2023 JA Family Summit

    Learn about the National Juvenile Arthritis Conference, a place for families to connect, share and learn.

    JA Camps

    The Arthritis Foundation’s JA camp programs give kids with arthritis and related childhood rheumatic diseases the chance to make lasting memories.

    Juvenile Arthritis Volunteer

    • About Juvenile Arthritis
    • Treatment
    • Managing Pain
    • Medical Decisions
    • Nutrition
    • Emotional Well-being
  • Professionals
    Common Topics
    Transforming Clinical Interactions

    The Live Yes! Arthritis community connects patients with others online and in-person for support and education, and encourages patients to play an active role in their health care.

    Partners 4 Patients with Arthritis

    The Arthritis Foundation recently launched an initiative to build stronger relationships and increase recognition of our most engaged practices.

    Fellowships

    See how we're aiming to address the growing shortage of arthritis specialists, especially in under-served parts of the country.

    • Better Living Toolkits
    • Our Issue Briefs
  • Science
    Common Topics
    OACS Forum Series

    The Osteoarthritis Clinical Studies Forum Series features OA thought leaders from across the globe discussing the future of how the disease can be treated to improve patient outcomes.

    man bandaging boy's knee Conquering Childhood Arthritis

    The Arthritis Foundation is mobilizing patients and their families to engage in studies comparing the effectiveness of treatments for juvenile arthritis and funding research for more options.

    Focus

    • Awards
    • Funding Opportunities
    • OACS Forum Series
    • Osteoarthritis Focus
    • Participate in Clinical Trials
    • Partnerships
    • Publications
  • Get Involved
    Common Topics
    Capital hill Action Center

    Take action today - use the resources here to learn who your elected officials are, what opportunities we have to advocate from the comfort of your own home, federal and state legislation, and more!

    LiveYes! Insights thumbnail Live Yes! INSIGHTS

    Share your experience in a 10-minute assessment to be among those changing the future of arthritis.

    woman listening to podcast Live Yes! Podcast

    You may have arthritis, but it doesn't have you. The Arthritis Foundation’s one-of-a-kind podcast. Hosted by patients, for patients.

    • Advocacy
    • Ways to Give
    • Fundraising
    • Volunteer
    • Partnership
    • Live Yes! Arthritis Community
Donate
Back

From Patient to Patient Leader: Every Voice Counts

We are spotlighting two people this month who are sharing their experiences as members of the Arthritis Foundation’s Patient Leadership Council (PLC). Learn how to apply to join the PLC at the end of this post.

By Sarah Cloud | Sept. 1, 2021

An arthritis diagnosis can be one of surprise and acceptance or one of absolute fear. It all depends on what words precede the word “arthritis” and how your health care provider may explain and support your diagnosis.

As someone who was diagnosed at the age of 19 with osteoarthritis and then as a mom who heard the phrase, “I think your child has juvenile arthritis,” the impact varied greatly. As time passed, my husband was diagnosed with ankylosing spondylitis and I with rheumatoid arthritis. Unfortunately, what didn’t change was the lack of local resources, information and care. Our son was misdiagnosed and even had an unnecessary emergency surgery before we heard that horrid phrase, “juvenile arthritis,” combined with “We need to send him north to Salt Lake City, 300 miles away.”

The doctors in our rural area hadn’t seen a patient like our son. I didn’t know another parent on this journey for over two years. In the years that followed I found an amazing group of moms on Facebook who helped us along our journey, and we became heavily involved in the Arthritis Foundation.

One night, I was reading a newsletter and there was a link for a newly forming Patient Leadership Council (PLC). The Foundation was looking for people to apply, but I almost didn’t. I had talked myself out of it. Why? Who wants to hear from a school bus driver in the middle of nowhere who has no letters behind her name? I didn’t have any formal education and no connections to the Foundation, as there was no local Foundation office. We joked at national events and online that we lived in “No Man’s Land.” We lived in Hurricane, Utah, located 16 miles from Arizona and about 40 miles to Nevada. It’s often known as “Land of the National Parks,” but not much else.

Eventually, a few good friends told me to apply because the worst they could say was no. Imagine my surprise and shock when I received a call and an email inviting me to sit on the Inaugural panel of the Patient Leadership Council — me! Little ole me, the uneducated school bus driver from the middle of nowhere me.

Being a member of the PLC has allowed me to express my voice as a mom, but especially as a rural mom, when it came to what we needed and what was considered. The care my son received was so vastly different from the care our friends in Salt Lake City received. We had the same doctors but different access. If we had a problem, it required a six-hour drive each way and a hotel room if we could afford it.

Most the time we couldn’t afford a new set of tires for the car to make the trip, let alone to stay the night. This meant that many times our son had to receive care once every six months or by phone. If we had problems, I had to email pictures to the doctors in Salt Lake City, then they would tell us what to check for and what to do. Think: pre-telemedicine. I couldn’t just schedule him for clinic. Scheduling for clinic meant a day off work, having to find a substitute, arranging transportation, gas, meals and entertainment for a then-preteen who hated car trips.

To be able to voice what was different from our perspective gave voice for every rural family the foundation serves. It allowed us as patients to say: “Nothing about us without us.” We have been asked to weigh in on many things, from the direction of events to targeted market research studies. We never know what will come our way to study and voice feedback on.

I have loved my time on the PLC. I have formed friendships with people I probably wouldn’t have met. With these friendships and support and encouragement, this mom went back and earned a college degree in patient access and we have since moved to rural southwest Missouri, where, Ironically, we face many of the same challenges with lack of resources and care, but this time I know I have a voice and resources to change that.

If you’re like me and don’t think your little voice matters, you’re wrong. Your experiences and voice are needed to shine light on what we as a collective community can do to change the access and outcomes for people everywhere.

If you’re interested in joining us, apply. The worst they can say is no.

Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can apply HERE . Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word!
Get Involved
  • Live Yes! Arthritis Community
  • Live Yes! Connect Groups
  • Live Yes! Online Community
  • Local Office
  • Fundraising
  • Webinars
  • Volunteer Portal
  • Store
About
  • About Us
  • Annual Report
  • Careers
  • Code Of Ethics
  • Financials
  • News and Stories
  • Privacy Notice
  • Terms of Use
  • Español
Join Us
  • Jingle Bell Run
  • JA Camps
  • Pathways Conference 2023
  • Walk to Cure Arthritis
  • Fundraise Your Way
  • JA Family Summit
Home Office
  • 1355 Peachtree St NE Suite 600
  • Atlanta, GA 30309
  • Helpline: 1.800.283.7800
  • Contact Us
Mountain View, CA
49° Arthritis Index At Risk
See More Details
Arthritis Foundation is a qualified 501(c)(3) EIN 58-1341679
I Want to Contribute
I Need Help
  • Donate

    Donate

    Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life.

  • Volunteer

    Volunteer

    Join us and become a Champion of Yes. There are many volunteer opportunities available.

  • Live Yes! INSIGHTS

    Live Yes! INSIGHTS

    Take part to be among those changing lives today and changing the future of arthritis.

  • Partner

    Partner

    Proud Partners of the Arthritis Foundation make an annual commitment to directly support the Foundation’s mission.

Donate


Ways to Give

Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life. Whether it is supporting cutting-edge research, 24/7 access to one-on-one support, resources and tools for daily living, and more, your gift will be life-changing.

Make a Donation

Help millions of people live with less pain and fund groundbreaking research to discover a cure for this devastating disease. Please, make your urgently-needed donation to the Arthritis Foundation now!

Become a Member

Become an Arthritis Foundation member today for just $20 and you'll receive access to helpful tools..... and more.

Make a Honor or Memorial Gift

Honor a loved one with a meaningful donation to the Arthritis Foundation. We'll send a handwritten card to the honoree or their family notifying them of your thoughtful gift.

Gift Planning

I want information on ways to remember the AF in my will, trust or other financial planning vehicles.

Other Ways to Give

  • Match Gift
  • Donate a Car
  • Donor-Advised Funds

Volunteer


Volunteer Opportunities

The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community. We can only achieve these goals with your help. Strong, outspoken and engaged volunteers will help us conquer arthritis. By getting involved, you become a leader in our organization and help make a difference in the lives of millions. Join us and become a Champion of Yes.

Become a Volunteer

More About Volunteering

  • Walk to Cure
  • Jingle Bell Run
  • Do it Yourself Fundraising
  • JA Camp
  • Start a Live Yes! Connect Group
  • Be an Online Community Moderator
  • Local Leadership Board

Live Yes! INSIGHTS


Give Just 10 Minutes.

Tell us what matters most to you. Change the future of arthritis.

By taking part in the Live Yes! INSIGHTS assessment, you’ll be among those changing lives today and changing the future of arthritis, for yourself and for 54 million others. And all it takes is just 10 minutes.

Your shared experiences will help:

- Lead to more effective treatments and outcomes
- Develop programs to meet the needs of you and your community
- Shape a powerful agenda that fights for you

Now is the time to make your voice count, for yourself and the entire arthritis community.

Currently this program is for the adult arthritis community.  Since the needs of the juvenile arthritis (JA) community are unique, we are currently working with experts to develop a customized experience for JA families.

How are you changing the future?

By sharing your experience, you’re showing decision-makers the realities of living with arthritis, paving the way for change. You’re helping break down barriers to care, inform research and create resources that make a difference in people’s lives, including your own.

Get Started

Partner


Meet Our Partners

As a partner, you will help the Arthritis Foundation provide life-changing resources, science, advocacy and community connections for people with arthritis, the nations leading cause of disability. Join us today and help lead the way as a Champion of Yes.

Trailblazer

Our Trailblazers are committed partners ready to lead the way, take action and fight for everyday victories. They contribute $2,000,000 to $2,749,000

Visionary

Our Visionary partners help us plan for a future that includes a cure for arthritis. These inspired and inventive champions have contributed $1,500,00 to $1,999,999.

Pioneer

Our Pioneers are always ready to explore and find new weapons in the fight against arthritis. They contribute $1,000,000 to $1,499,999.

Pacesetter

Our Pacesetters ensure that we can chart the course for a cure for those who live with arthritis. They contribute $500,000 to $999,000.

Signature

Our Signature partners make their mark by helping us identify new and meaningful resources for people with arthritis. They contribute $250,000 to $499,999.

Supporting

Our Supporting partners are active champions who provide encouragement and assistance to the arthritis community. They contribute $100,000 to $249,999.

More About Partnerships

  • Partner with Us
  • Ease Of Use Commendation
  • Let's Get a Grip On Arthritis
  • Promotions that Give Back