All posts by Arthritis Foundation

An Arthritis Patient’s Journey With CBD

Read the Foundation’s official CBD Guidance for patients.

We recently connected with rheumatoid arthritis (RA) patient and Arthritis Foundation volunteer Ron Lev to find out more about his personal experience with CBD. Ron was formally diagnosed with RA 27 years ago and currently leads an Arthritis Foundation Connect Group, providing support to other arthritis patients.

ARTHRITIS FOUNDATION: Thank you for taking the time to chat with us today, Ron. First off, do you use prescribed medications to manage your RA symptoms?

Ron: Yes, for overall management of my RA, I use rituximab.

ARTHRITIS FOUNDATION: I also see that you have used CBD to help with your pain. What made you decide to try CBD?

Ron: In one word — steroids. Pretty much since day one of my RA diagnosis I was put on prednisone, and for the following 23 years, was a real addict. Trying to quit steroids, I always ended up in pain. And we all know what harsh side-effects steroids have, especially when taken long-term.

I began using CBD oil and, in parallel, with steroids so that I could reduce my steroids intake. I began cutting my prednisone to half dosage, and then to quarters. By the end of the third week, I just felt I no longer needed steroids. It’s been four years and I have never looked back. For overall management of my RA, I use rituximab.

ARTHRITIS FOUNDATION: With the rise in awareness of CBD products, where did you find information on CBD?

Ron: It all started with a scam. Around five years ago, I was targeted with an online ad urging me to try a CBD oil bottle for only the shipping cost. I thought to myself, heck, why not? Well, little did I know, it was a scam. I did get a bottle of oil, but also went on an auto-charge plan for a whopping $100 a month! Getting off their fraudulent scheme was tougher than terminating cable television, but I finally did it.

This sparked my interest in really researching the topic of CBD. I learned all about the hemp plant and the naturally occurring substances within it. I also learned that there were many more cannabinoids in addition to CBD and how all these interact with our bodies.

ARTHRITIS FOUNDATION: That must have been very frustrating. When you decided to start researching on your own, how did you decide what form and dosage of CBD to use? 

Ron: With so many products out there (many of which of very low quality) and with little to no regulation over the market, I decided to source my own raw material and create my own oil blend. I know, pretty adventurous.

After thorough market research and some recommendations from trusted sources, I found my source, detailed my specifications, and requested samples. I was ready to experiment. I decided to start low and gradually increase my dosage. I began with 1/2ml twice a day, and after a week, I felt fine, so went up to 1ml twice a day, then up to 2ml. I didn’t experience any side effects. After a year when I was feeling good, I begin to dose down, going to 1.5ml a day from 2ml. It worked well for me.

ARTHRITIS FOUNDATION: During your experimentation to find out if CBD would work for you, did you discuss CBD with your doctor?

Ron: Having had RA for so long, I have learned to adopt an active/pro-active approach. I most often do my own research and homework and then come to my rheumatologist with my ideas and suggestions.

I have honest and open communication with my rheumatologist but decided to try CBD for a few months to see how my body reacted before discussing it. I’m not saying this is the right approach for everyone, since it depends on your type of arthritis, disease activity, other medications, etc. When I shared with him that I didn’t need the steroids, he respected my decision, although he said he couldn’t recommend CBD.

In the case of CBD, or rather hemp oil (and cannabis in general), most MDs will refrain from actively approving such treatments simply because they have to follow the traditional guidelines of medicine with recommendations supported by substantial clinical trials if not completely approved by the FDA.

ARTHRITIS FOUNDATION: Thinking back on the entirety of your experience with CBD, what advice would you give other RA patients about using CBD?

Ron: I think three things are very important to remember:

  • Give it some time. People tend to expect an overnight miracle, and in the case of systemic diseases like RA, it just won’t happen. Cannabinoids need time to interact with our own endocannabinoid system and to interact with the relevant receptors within our cells. Give it time — it can take weeks, or even months to work. And, yes, it may not work at all. But if you won’t give it a fair chance, how would you know?
  • Use trial and error. Like with any medication, there’s no “one-fits-all” formula. There’s a lot of trial and error involved both with dosage as well as with the substance itself. You might be lucky and find your perfect match on your first trial, but you might also have to go through a few other products to find the one that works for you.
  • Don’t believe everything you read and hear. There are many people out there who are in the CBD space “for the ride” (Amazon is full of super cheap CBD products with specifications that don’t even make sense). Do your research and talk to others in your condition that found relief. There’s nothing like that patient-to-patient trust.

ARTHRITIS FOUNDATION: Ron, thank you for your time today and for sharing your story. 

To learn more about CBD, visit the Arthritis Foundation’s website. Want to have your voice heard? Participate in a collaborative survey on medical cannabis from researchers at the University of Michigan, McGill University, the Arthritis Foundation and the Arthritis Society (Canada).

October 2021 Arthritis News Roundup

The Arthritis Foundation is your trusted source for arthritis-related news and COVID updates that affect people with arthritis. Here’s a wrap-up of the headlines from this past month.

The latest in COVID-19 News & Arthritis

FDA Committee Greenlights COVID Vaccines for Young Kids

The Vaccine and Related Biological Products Advisory Committee for the U.S. Food and Drug Administration (FDA) voted by a majority to authorize the emergency use of Pfizer-BioNTech’s COVID vaccine for children ages 5 through 11. Read the latest.

FDA Authorizes Boosters for Moderna and J & J, Allows Mixing

The U.S. Food and Drug Administration (FDA) has authorized booster doses for the Moderna and Johnson & Johnson COVID-19 vaccines, while also allowing boosters to be given interchangeably with any of the other vaccines in people who are eligible to get them. Learn more.

CDC Research Shows Children Equally Vulnerable as Adults to COVID

According to new research from the Centers for Disease Control and Prevention (CDC), children had similar infection rates, compared with adults, confirming there is risk of people of all ages. The research revealed that schools without mask requirements were three-and-a-half times more likely to have COVID-19 outbreaks than those enforcing mask mandates. Read more about it.

Get the latest on managing your arthritis during the COVID pandemic in the Care & Connect resource center.

In Other Arthritis News

Prevalence of Arthritis in the U.S. Continues to Rise

National prevalence of arthritis and arthritis-attributable activity limitations continue to increase. According to the CDC, 58.5 million (23.7%) U.S. adults now have arthritis — 25.7% of whom have arthritis-attributable activity limitations. Read more about the impact of arthritis.

New Finding: 71% of Active Adults With Arthritis Walk for Physical Activity

Physical activity can reduce pain, disability and functional limitations while also improving mental health and quality of life in adults with arthritis. Just over one-third of adults with arthritis are aerobically active. New research from the CDC shows approximately 71% of adults with arthritis who were physically active in the past month reported walking as one of their two most frequent activities. Learn how other activities ranked.

And be sure to check out Walk With Ease, the Arthritis Foundation’s walking program proven to reduce arthritis symptoms and improve health.

FDA Approves Combo Pill for Severe, Acute Pain

The FDA has approved a combination pill containing celecoxib and tramadol for the treatment of adults with acute pain severe enough to require an opioid analgesic and for which alternative treatments fail to provide adequate pain relief. Get the details here.

To learn more ways to take control of pain, visit

FDA Approves First Nasal Spray to Treat Dry Eye

The FDA has approved varenicline solution (Tyrvaya), the first nasal spray given the greenlight to treat dry eye disease. Varenicline solution will provide an alternative to the immunomodulators currently available.

Learn about the connection between dry eyes and arthritis.

Updates to Guidance for Shingles and Pneumococcal Vaccines

The CDC Advisory Committee of Immunization Practices (ACIP) voted to recommend zoster vaccine recombinant, adjuvanted (Shingrix) for the prevention of shingles in immunodeficient or immunosuppressed adults age 19 or older. During the same meeting, ACIP also voted to recommend pneumococcal vaccines for routine use in adults older than 65 and in adults ages 19 to 64 with chronic conditions such as diabetes, chronic heart disease, chronic liver disease and HIV, and disease risk factors like smoking and alcoholism.

National Emergency Declared for Mental Health in Children

The American Academy of Pediatrics (AAP), the American Academy of Child and Adolescent Psychiatry (AACAP) and Children’s Hospital Association have declared a national emergency in children’s mental health. According to the organizations, COVID-19 has taken a serious toll on top of already mounting challenges and policy changes are urgently needed.

Know the signs and how to recognize emotional distress in your child with juvenile arthritis.

High-Intensity Resistance Training Bests Pilates for Better Bone Density in the Spine

An eight-month high-intensity resistance and impact training program (HiRIT, Onero) led to greater gains in lumbar spine bone mineral density (BMD) and leg/back strength than a low-intensity Pilates-based program. Learn more.

Retraining the Brain May Help Relieve Chronic Back Pain

A patient’s perception of pain plays a key role in pain outcome, according to new research. Psychological therapy that changes an individual’s beliefs about pain not only provides lasting chronic pain relief but also alters brain regions related to pain generation. Read more about it.

Exercise Appears to Improve Bone Structure, Not Density

A recent study concludes there’s much more to bone health than strictly bone density and that postmenopausal women with low bone mass should obtain adequate calcium and vitamin D as well as participate in bone-loading exercises. Learn more.

Vim Champion: Tiffany Coffman

As an arthritis patient and longtime Arthritis Foundation volunteer, Tiffany has found ways to give back — and to encourage others. She also recommends trying the new Vim app.

By Tiffany Coffman, Denver, Colorado

I’ve raised two children with arthritis and battle four kinds of the disease myself. I take 36 pills a day, from my prescribed disease-modifying antirheumatic drugs (DMARDs) to over-the-counter pain meds. Honestly, it’s been tough at times, but we’ve gotten through it all, thanks in large part to the many friends we’ve made in the arthritis community over the past 15 years. I became a passionate volunteer for the Arthritis Foundation because I wanted to give back and help others, like we were helped.

As part of a community of 54 million warriors, we can each do something to fight arthritis by giving what we can — whether that’s volunteering, advocating or making a tax-deductible donation. On World Arthritis Day, we can share hope with each person living with pain.

My family’s arthritis journey

My pain began when I was in high school. I was super active in soccer, marching band and coaching sports at the YMCA. All of that came to a screeching halt when I was diagnosed with rheumatoid arthritis. I hurt all over, especially in my feet, ankles, wrists and fingers. Since then, I’ve also been diagnosed with osteoarthritis, fibromyalgia and Sjögren’s syndrome, all of which are arthritis-related conditions. Soon I will have a bone-scan for osteoporosis, which will be a whole new ballgame.

Arthritis has also affected my children. My son, Christopher, who’s now 17 and a high school senior, had symptoms at birth. I took him to the doctor when he was 18 months old to find out why he wasn’t walking. A year later, he was diagnosed with juvenile arthritis (JA).

A few years after that, my daughter, Brittany, was diagnosed with fibromyalgia at age 15. Who would have thought it can affect the reproductive system? We learned about that from the Arthritis Foundation, as well as alternatives we could explore when my daughter, now 27 and married, couldn’t conceive. I’m thrilled to become a first-time grandma of my adorable new grandson, whom they recently adopted.

I love kids.

Over the years, we’ve participated in Arthritis Foundation JA camps, JA family days and the National JA Conference, which were so informative and inspiring to our whole family as my children grew up. Besides my involvement in those, I became a leader and moderator for Live Yes! Connect Groups for JA parents, which we’ve held virtually during the pandemic. My family has also been active in our local Walk to Cure Arthritis.

I volunteer for the Arthritis Foundation’s Helpline, too, when questions come up about JA. I feel the best way to help is to listen and show compassion for what someone believes is their most difficult situation ever. I have learned to be more compassionate. Everyone has an issue, so we make the best with what we have.

I love my job, and I love kids, which is why I’ve run my own daycare center from home for several years. But watching 10 kids a day can be challenging at times. To keep up and keep me going, I’ve been using the Arthritis Foundation’s new Vim app. It’s part of the Foundation’s overall focus on managing chronic pain, which I also love.

The Vim app can help change your life.

The free Vim app has so many benefits. I hope you’ll give it a try. It’s easy to use, which is great for someone technology-challenged like me!

  • In Vim, I get asked what my pain level is every day — a question I don’t usually get asked except at my doctor’s appointments. So, I get to monitor my pain over a period of time, see what’s triggering my symptoms when, and maybe make adjustments so I’m in greater control.
  • I have used everything — the app’s diet tips, info about yoga, meditation, self-reflection, breathing, different supplements you can use and more. It’s all there.
  • You can set your own short-term goals and keep track of how you’re doing. Like walk to the end of the block three times a week. Get in the car and take a ride twice a week. Reach out to a friend for moral support. Just give it time and practice.
  • The encouragement I get from others in the arthritis community is unbelievably motivating. Besides seeing people cheer me on, I can help others if they’re having a bad day. We’re all in this together.

With Vim, you can take back what chronic pain has taken away. Give it a try. I whole-heartedly recommend it!

The invaluable support and resources that have made such a big difference in Tiffany’s life are made possible thanks to friends like you. You can power more life-changing research, support and tools by making a donation today.

September 2021 Arthritis News Roundup

The Arthritis Foundation is your trusted source for arthritis-related news and COVID updates that affect people with arthritis. Here’s a wrap-up of the headlines from this past month.

The Latest in COVID-19 News and Arthritis

WHO Monitors New ‘Mu’ COVID-19 Variant

The World Health Organization is monitoring a new coronavirus variant called “mu,” which the agency says has mutations that have the potential to evade immunity provided by a previous COVID-19 infection or vaccination. Get details here.

NIH to Study COVID Vaccine Booster in Autoimmune Patients

The National Institute of Allergy and Infectious Diseases has begun a phase 2 trial to assess the antibody response to a booster dose of the Pfizer-BioNTech, Moderna or Janssen vaccine in people with autoimmune disease who did not respond to their original COVID-19 vaccine regimen.

COVID-19 Vaccine Elicits Antibodies in 90% Taking Immunosuppressants

Nearly 90% of people taking immunosuppressants to treat autoimmune conditions produce an antibody response to COVID-19 vaccination, but the response is weaker than those generated by healthy people, according to a new study. Learn more.

Get the latest on Arthritis and COVID-19 vaccines FAQs in our Care and Connect resource hub.

Nasal Cartilage Relieves Knee Osteoarthritis

Cartilage cells from the nasal septum cannot only help repair cartilage injuries in the knee — they can also withstand the chronic inflammatory tissue environment in osteoarthritis (OA) and even counteract the inflammation, according to researchers at the University of Basel and the University Hospital of Basel. Read all about it.

Drug Adherence Tied to Genetic Influences, Not Side Effects

The results of new research suggest that drug adherence pertains more to an individual’s genetic predisposition to particular behaviors than to underlying biological factors, such as the adverse effects of a specific drug, the researchers conclude. Learn more.

Cannabis Use Tied to Poorer Outcomes of Total Hip, Knee Replacement

Cannabis use before total knee or hip replacement is associated with increased medical and implant-related complications, according to new research presented at the annual meeting of the American Academy of Orthopaedic Surgeons. Read more.

The Arthritis Foundation developed guidance for adults with arthritis who are exploring CBD use as a treatment for managing pain and other symptoms of arthritis. Learn more about what you should know about CBD before trying it.

And learn more about total knee and hip arthroplasty. If you’re exploring whether surgery is right for you, listen to the podcast episode on Arthritis Pain & Surgery.

In Other Arthritis News

Arthritis@Work for Corporate Wellness Programs

The Arthritis Foundation is offering employers free turnkey tools and resources to support their employees with arthritis. As the second largest driver of employee health care costs, arthritis is responsible for 172 million lost workdays each year. Integrated into existing corporate wellness programs, Arthritis@Work is a win-win way for employers to protect their bottom line by caring for those who care for their business.

Novartis Gets FDA Fast-Track Designation for LNA043 in Knee OA

The Swiss drug maker said it is developing LNA043 as a potential first-in-class disease-modifying treatment for OA. The FDA’s fast-track program is designed to facilitate the development and expedite the review of treatments for serious or potentially life-threatening illnesses with high unmet medical needs.

No Sex Difference Seen for Ankylosing Spondylitis

The incidence of ankylosing spondylitis (AS) did not differ between men and women in a large study of military personnel, which called into question the previous assumption of male predominance for this disease. Read about the study.

Osteoarthritis: New Genetic Risk Factors and Novel Drug Targets

Researchers have found new genetic risk factors for OA and identified novel drug targets. Their finding is a milestone toward the development of the first ever curative treatment for OA. Learn more.

TPX-100 Delays Bone Shape Change, Stabilizes Cartilage in Bilateral Knee OA

TPX-100, a promotor of osteoblast and chondroblast differentiation, is a potential therapy for OA. A new retrospective study compared MRI 3D femoral bone shape changes (B-scores) after intra-articular TPX-100 or placebo and analyzed the relationship between cartilage thickness and bone shape change over 12 months.

For pain management resources and tools, visit

Natalie Decker

Natalie Decker is a Chronic Strength Champion, which means she doesn’t just take control of her pain — she battles back. Read to learn how Natalie is driven to overcome her rheumatoid arthritis.

Most of my life, I’ve known two things for certain: 1) I always wanted to be a NASCAR driver; and 2) being born with juvenile rheumatoid arthritis (JRA) would not stop me from pursuing a fulfilling, active life. Now, at the age of 24, I can happily say I’ve followed through on my commitments to both, as one of the top young drivers on the NASCAR scene and an advocate for other arthritis patients to follow their dreams.

The road to managing RA

Getting to this place in my life has been full of ups and downs. After being diagnosed with JRA at the age of 2, I began a high dosage of a chemo drug once a week for over 10 years. It made me very tired, gave me headaches and left me feeling sick and nauseous all the time. Around the age of 12, I went into remission and got off the medication.

Throughout this time, I continued to stay active. In fact, my pediatrician couldn’t believe all that I could do as a child. Whether it was dance, hockey, soccer or go-kart racing, he told me that the activities should have been physically impossible for me to do, and yet, I persisted. I learned early on the importance of having a great support system and believing in myself to achieve whatever I put my mind to. This helped me manage the symptoms of my disease and stay active while also pursuing my dream of becoming a NASCAR driver.

Today, managing my RA looks different. I came out of remission not long ago, and the pain and stiffness are significantly worse than when I was younger. I am learning how to take care of myself and build in regular breaks throughout my day. Racing in my car for hours at a time in one position can be painful, so I must be prepared, learn how to recover fast and know my limitations in the gym. The Arthritis Foundation’s Vim app has been a helpful tool in setting and tracking goals and accessing the latest information for pain management. Like many patients with RA, I’m currently on infusions to manage the symptoms.

Building a community

My parents did not know about the Arthritis Foundation and all the benefits it provides when I was growing up, but I was fortunate to be surrounded by supportive family throughout my journey. We would travel all over on the weekends to racing events where everyone we met became extended family. It helped me work hard to pursue my dreams, knowing my community of support was cheering me on.

Because I know how important it is to have that community in place, I’ve made it my commitment to partnering with the Arthritis Foundation to help give kids the support they need — just like I did. I’ve become involved with Live Yes! Connect Groups and the JA camps (my favorite!) and see firsthand the immense benefits they provide to young patients. While I wish I had known about them growing up, it’s now my mission to help ensure that other kids go to camp and have access to the resources, local programs and support they need through the Arthritis Foundation.

Having a community of support is so important to empowering young people to chase their dreams and live a full life. For a long time, I was hesitant to share my story, but I’m so grateful for the opportunity to share it now and hopefully play a small role in inspiring others. Together with the Arthritis Foundation and the public’s help, we can change lives!

King of the Hill in Fighting Chronic Pain

 Helen King is a longtime Arthritis Foundation volunteer who has made a significant impact locally (Eastern Pennsylvania and Southern New Jersey) in the fight against arthritis — and is a new member of our national board of directors. Here, she talks about the Foundation’s pain management strategy.

By Helen King, King of Prussia, PA

Last spring, I was pleasantly surprised to be asked if I’d be interested in joining the Arthritis Foundation’s national board of directors. I was. And I was voted in by the full board this past summer. What an honor and privilege this is to me, after volunteering for the Foundation locally over the past few years.

I was diagnosed with acute onset, and aggressive, rheumatoid arthritis (RA) in 2014. I didn’t expect this sudden diagnosis, and it felt like a death sentence at the time. I pictured myself being immobile, wheelchair bound and worse. I’ve also been diagnosed with osteoarthritis, degenerative disk disease and spinal stenosis. I underwent spinal surgery several years before my RA diagnosis. Perhaps that’s when my RA started developing. We’ll never know. Learning I had RA was a tough blow, and I didn’t know where to turn until I found the Arthritis Foundation.

Getting involved with the Arthritis Foundation is a way for me to give back. Over the past few years, I’ve volunteered as a Platinum Ambassador, speaking up to help enact new laws that make health care more affordable and accessible. I’ve led my local Walk to Cure Arthritis team, and together we’ve raised around $300,000 for arthritis research and resources since 2017. I’ve led local and national Live Yes! Connect Groups to help bring our community closer together, especially during the pandemic.

That’s how it all started. And it’s why I’ve immersed myself in the arthritis community. This is a genuinely supportive family. It’s such a great support system of people you meet along the way as a volunteer. I know I’ve made an impact on people locally. And I’m just so grateful and humbled to now give back on the national level. I can bring even more of the patient perspective into the mix as the Foundation’s pain management strategy comes to life. That’s what I’m excited about.

From my view as a patient: I’m really glad that the Arthritis Foundation is putting a special focus on pain management over the next few years. Pain permeates everything, and it’s very individualized. If you’ve never lived in chronic pain, it’s kind of hard to understand how it can seep into every part of life. It impacts you socially, financially, emotionally, mentally and spiritually. Living with chronic pain every day changes who you are.

Pain can affect your mental health and your ability to sleep well. It can lead to depression and anxiety. I think it’s great that the Arthritis Foundation’s strategy encompasses the mental health side of pain, which needs to be recognized and focused on. I don’t think most people, including experts in the medical community, realize the extent of depression and anxiety that can accompany chronic pain.

I’ve learned that managing your pain is a layered experience. It’s multi-faceted for me. Maybe just one thing won’t take away your pain. Yes, it’s diet. Yes, it’s exercise and sleeping better. Yes, it’s pharmacological if need be. Each layer can help. It’s a multi-layered scenario that arthritis patients need to know more about. I love the idea that you can focus on short-term goals through Vim, the Arthritis Foundation’s new app, which I’m using regularly to make some progress, a step at a time. Perhaps best of all, you can connect with others like you, if you wish, to share tips and cheer each other on.

Holistically, the Arthritis Foundation’s stake-in-the-ground pain management statement is a huge focus area going forward. When talking with so many different people with many forms of arthritis in recent years, I often hear them say the pain aspect is diminished or forgotten. That they’re not heard when they go to the doctor. That they’re not heard by policymakers and other decision makers.

It’s important to understand that this is an Arthritis Foundation priority. It has always been there, but now it’s being spotlighted in a bigger way. Everything about the arthritis movement must keep that pain aspect in mind. Just know that my fellow board members and I are standing up for you as the Foundation focuses on the number one complaint people with arthritis have: PAIN. I’m proud to represent you as a new national board member. And I appreciate this opportunity to make an even bigger impact on a larger stage.

Helen’s tips for living your best life with arthritis:

1.) Find your tribe

Seek people who can support you through your bad days and be there to celebrate with you on your good ones.

2.) Be proactive in your health care

Advocate for yourself. It’s not about your doctor telling you what to do, it’s about partnering and learning how to talk to your doctor to get the best outcome.

3.) Practice self-care

A lot of women are bad at putting themselves first. But it’s important to do something that feeds your soul. For me, it’s volunteering and giving back.

4.) Keep a positive attitude

We all have down days. By no means am I flying through this without getting depressed or getting tired of being in pain after 3 days of a flare. I just try not to get stuck there.

Travis Salmon

Travis Salmon is a Chronic Strength Champion, which means he doesn’t just take control of his pain — he battles back.  Read to learn how Travis has found ways to overcome his osteoarthritis.

In my late 20s, I was unexpectedly diagnosed with end-stage osteoarthritis (OA) in my ankle — and told that, at some point, I’d need to have my ankle fused. Fresh out of law school and still playing basketball multiple times per week, the news came as a total shock. As a former college athlete, I was devastated that I might never be able to shoot hoops with my own kids.

For 15 years, I tried anything and everything to avoid ankle fusion surgery. The possibility of it scared me. I envisioned a future where I would be unable to move my ankle permanently and was determined to avoid surgery.

Overcoming emotional and mental challenges

During this period, the physical pain was a huge part of my journey. But the emotional and mental aspects of OA were just as challenging. The diagnosis really limited what I could do with my family. Daily, I’d wonder how I would manage simple things like grocery shopping and carrying my kids around. And when it came to family trips, I’d plan the entire vacation around activities that didn’t involve much movement.

Desperately searching for an all-encompassing resource to learn about treatments and options for managing my disease, I tried every OA treatment available. From stem cell therapy to assistive devices, and even participating in clinical trials. During this time, I also began volunteering with the Arthritis Foundation of Greater Kansas City (AFGKC) and eventually joined their board of directors. I found a deep sense of meaning and connection, sharing my story with young people and speaking about overcoming the challenges of arthritis.

After exhausting my options for managing OA without surgery, I eventually had ankle fusion therapy, which virtually cured my arthritis pain. I’m so grateful for it. And it has changed my life for the better. Recovery took about a year. But today I’m able to walk, run, jog and do things I hadn’t been able to do for 20 years.

Finding my community

My pain management journey has been a long and winding road. And until I discovered the Arthritis Foundation, it was a lonely one, too. Now, as a patient advocate, I work to ensure patients that you can more quickly and easily gain access to the wealth of resources the Arthritis Foundation offers.

Through the Vim app, I have all the resources needed right at my fingertips, including treatment options, pain management tips, suggestions for physical activities and local groups and events to connect with right here in my own community. I also rely on the app’s ability to track my pain in between doctor’s appointments, which has helped ensure more accurate and informative discussions when it’s been months since my doctor and I talked. I only wish that I had access to this 20 years ago, when first learning about my diagnosis. For anyone going through this journey, know that you do not have to spend years looking for solutions and educating yourself in isolation, like I did.

Today, I lead an active life as a busy trial attorney and father of two, outside of my role as a Patient Leadership Council member. While I can’t play basketball at the same level I did in college, I am still physically active — swimming, cycling, walking and weightlifting. For young people diagnosed with arthritis: My hope for you is to live a healthy, active life and, importantly, surround yourself with the support and resources needed to keep moving forward — even through the tough times.

Yoga: So Much More Than Just Movement

By Rebecca Gillett, MS OTR/L, Live Yes! With Arthritis Podcast Co-host

September is Pain Awareness Month, and in this podcast episode, Mindful Movement Part 2: Yoga, we’re exploring ways to keep our bodies moving to prevent arthritis pain from limiting our lives. In the last episode, we focused on mindful movement and tai chi. This time, we’re diving into mindful movement of yoga and arthritis.

When you have arthritis, you probably think, “No way can I do those poses with my joint pain. Yoga is going to make my pain worse!” That’s exactly how I felt when I was first diagnosed.

I have a favorite cartoon that demonstrates what I think about arthritis and yoga. Google it for a good laugh. It shows the Tin Man from The Wizard of Oz in a yoga class. I’ll wait…. You’re welcome.

I started going to yoga classes in my early 20s and really enjoyed them. Even though that was a long time ago, I remember the sense of calm and positive energy I felt when leaving a class. As a matter of fact, I distinctly remember how I was so relaxed at the end of one class that I fell asleep! I woke up to the lights coming on and everyone leaving. Imagine that: A yoga practice that puts you in such a calm, relaxed state that you fall asleep.

But then I was diagnosed with rheumatoid arthritis at age 26 and I struggled with so much pain those first two years that I stopped yoga. I didn’t think I could do it at all anymore because of my wrist pain.

I often talk about how we can sometimes get “stuck” in our pain: We cannot see past the pain to solutions that may be right in front of us because we are in survival mode. We struggle to do some of the most basic things — getting out of bed, brushing our teeth, going down the stairs. Any type of movement can be daunting, so the idea of doing a warrior or mountain pose sounds even less achievable.

This episode, Mindful Movement, Part 2: Yoga, was a fantastic reminder to me about what the practice of yoga truly entails and how you can adapt yoga to suit your needs. Our guest expert, Steffany Moonaz, PhD, founded the Yoga for Arthritis program after eight years at Johns Hopkins University, where she studied the effects of yoga for people living with arthritis. She helped us remember that there’s a way to practice yoga for everyone, no matter where you are in your journey with arthritis. Whether you practice chair yoga or modify a few poses, alone at home or in a group class, the physical and mental health benefits can go a long way to improving your overall well-being. Dr. Moonaz also shared ways to make sure you can find a yoga practice that works for you and a yoga instructor that’s right for your needs.

Tune in to this episode to learn how you can start incorporating yoga practice into your daily routine today. Listen now!

We Bid Thee Farewell, Julie!

Be sure to listen through to the end of this episode, as we chat with co-host Julie Eller. This is the final episode we recorded together before she left to start a master’s program in public health. Julie has been a force to be reckoned with while on staff at the Arthritis Foundation. She helped grow our grassroots advocacy efforts and she worked tirelessly to ensure the patients’ perspective is infused in everything we do that’s health care-related. I can’t imagine anyone better to co-host this podcast with, and in the process, how much we’d get out of doing this together. I’m grateful for every dance, every smile, every blooper and all of the laughter (and sometimes tears) we shared throughout this journey together. Most of all, I am forever grateful for the lifelong friendship we share. Best wishes, my pod sister, Julie! “Oh, the Places You’ll Go!”

Team PLC

This is the second of two profiles this month of people 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 Laura Genoves

The Patient Leadership Council (PLC) was formed by the Arthritis Foundation in 2017.  I have been fortunate to serve as a member of this diverse group of individuals from across the country since its inception.

In the days before COVID-19 (remember those days?) I would volunteer in person at my local Arthritis Foundation Office in Seattle once or twice a month. A staff member mentioned the newly forming PLC to me and encouraged me to apply. At the time, I was just finishing up my Limited License Legal Technician (LLLT) studies at the University of Washington School of Law and working toward my passion for affordable access to justice. LLLTs offer affordable family law services to those living in Washington State. Being licensed as an LLLT has provided the opportunity for me to give voice and meaning to the stories of those who traditionally could not afford the full services of an attorney. Now I provide licensed and professional assistance to those not able to represent themselves.

Being a member of the PLC has also afforded me the chance to be a voice for others. As a mom of two young adults (and two rescue golden retrievers), I share my own personal experiences living with rheumatoid arthritis (RA) and now osteoarthritis (OA), but I also advocate for the millions of others living with arthritis and related diseases. As a group, the PLC has discussed such timely topics as access to health care, prescription drug copays, out-of-pocket costs and CBD, and we have reviewed proposals under development by the Arthritis Foundation. We share with each other in a safe, confidential environment and exchange tips, tricks and tears.

The feedback we, as the PLC, provide to the Arthritis Foundation often illuminates, and it always enriches the Foundation’s offerings. The Foundation listens to the diversity of our voices and includes our feedback in its materials and programs. It’s fulfilling to see that we are making a difference. I have learned so much from the other council members and have made friends I can reach out to across the country.

If you have a passion for ensuring diverse voices are heard and are willing to be vulnerable and share your experience, consider being part of the PLC.  All are welcome to the table and your lived experience is valued.

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! 

Cristina Schaefer

Cristina Schaefer is a Chronic Strength Champion, which means she doesn’t just take control of her pain — she battles back. Read to learn how Cristina has found ways to overcome her rheumatoid arthritis.

Seventeen years ago, my life changed when I was diagnosed with rheumatoid arthritis. As someone who had always been active and athletic, the diagnosis hit me like a ton of bricks. Some days, I’d wake up with my elbows completely locked in a bent position, or my knees would lock when I’d stand. After a few years on biologic treatments, I was able to live, work and play again with little to no pain most days.

When my husband and I decided to start a family, I had to get off the medication that had kept me active and relatively pain-free for over 10 years. It was a stressful and painful time, but ultimately when our daughter was born, it was so worth it. Within a week of her birth, my RA symptoms came back with a vengeance. All the required and loving tasks as a new mom — holding her, snapping onesies, changing diapers — suddenly became impossible. Soon after, I met with my doctor to start the process of a new treatment plan.

Staying in control

Now, almost five years later, my doctor is still working with me to get me back to the controlled state I was in. Some days are great, others are not so great. All I can do is take each day as it comes and fight. I’ve said that a good measure of control over my arthritis revolved around the ability to give my daughter a bath and braid her hair at night without pain after working a long day.

Recently, I was paired with a medication that has helped me regain some of that control. I’ve found that setting goals for myself helps me stay motivated and get even stronger. When the Arthritis Foundation launched the Vim app, I downloaded it right away and started tracking my progress. After crushing my initial goal, now I have my sights set on new weightlifting and other physical activity goals to support my physical health, so I can ensure my well-being for many active years to come as my daughter grows. For arthritis patients, it’s so hard to find fitness resources and goals that don’t feel out of reach, and Vim is catered to us and our needs.

When I have downtime or periods of rest and recovery between my exercise regimens, I have found getting back to the gym is easier when I use daily affirmations. Lately these include telling myself I’m doing my best, I believe in myself, all progress is progress and I will listen to my body.

Connecting to resources and the Arthritis Foundation community

In researching pain management and sleep deprivation — the two areas I am often challenged with the most when it comes to my RA symptoms — the Arthritis Foundation has been a crucial resource in finding the helpful information I need. Over the years, this has included informative webinars, the Live Yes! With Arthritis podcast, blog posts on the topics, dietary resources and, most recently, in-depth information on using CBD to help with pain and sleep deprivation. I haven’t tried CBD yet, but I feel much more educated on it, the ways to use it and the pros and cons to the different methods/applications of it.

Since the beginning of my journey with RA, I have been involved with the Arthritis Foundation through Walk to Cure Arthritis. I have connected with so many helpful resources and met many inspiring and supportive people through this community. This year, I am honored to co-chair the National Walk to Cure Arthritis and bring my ideas and passion to the national level. When I’m not busy working as a social media professional or spending time with my family, I also serve as vice chair on the Foundation’s Houston leadership board and the patient leadership council.