All posts by Arthritis Foundation

Meet Sabina Ratner: One of Our Newest Foundation Sponsored Fellows!

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. This year we announced four new fellowship awards . One of those grants was offered to SUNY Downstate Medical Center, which recently announced their fellowship has been awarded to Dr. Sabina Ratner.

Dr. Ratner will be a welcome addition to this program. She began her undergraduate training at Brooklyn College, followed by graduate training as a physician’s assistant (PA) at SUNY Downstate in NY. She earned her medical degree from American University of Antigua College of Medicine in Antigua and Barbuda.

Dr. Ratner explains how she became interested in rheumatology:

As we go through life, events that may be deemed unfortunate often result in serendipitous moments. It wasn’t until a terrible accident where I was hit by a car that I realized I had a second chance at life and found my true calling.

I worked as a PA at NY Methodist Hospital for seven years before my accident. During my employment, I covered a variety of services, and I discovered that there were many facets to medicine that were fascinating, stimulating and rewarding. My experiences helped sharpen my clinical acumen and appreciation and understanding of medicine. Initially, I worked with the department of surgery, which included general surgery and orthopedics. My duties included patient care in the clinic and floors, emergency room admissions, pre- and post-operative care and counseling patients. As a PA, I was inspired by the passion and wisdom of the people I worked with. My colleagues recognized my aptitude for medicine and strongly encouraged me to get my medical degree.

After my accident, I went to rehab for physical therapy for my left leg and ankle. There, I met many people who were suffering from rheumatoid arthritis, osteoarthritis, back pain and hip and other joint problems. I empathized with these patients. Seeing people in pain and losing their functional mobility made me realize I wanted to seek a profession where I could help alleviate the pain and suffering of others. I found the rehab experience to be very rewarding and realized that, with proper treatment, people were able to regain their function, mobility and independence. My interest grew more and more for the field of rheumatology, so I went back to school and earned my medical degree.

The next stage of this journey was medical residency. I chose to explore the field of rheumatology further and opted to take as many electives as I could to learn more about this field. The experience further piqued my interest and helped me realize how fascinating and intricate rheumatology is.

There are many reasons why I want to join the field of rheumatology. I find it to be a very diverse field that is rapidly evolving and allows for the treatment of a broad range of conditions. Also, it is a specialty that can be challenging because a qualified physician must be able to treat different disease processes, solving medical mysteries. It is exciting and gratifying to help improve the quality of lives of others. I want to train and learn from the dedicated experts, which will give me the opportunity to broaden my understanding and knowledge about the disease progression and treatment with new agents that prevent further destruction in the body.

While the clinical experience is important to me, I’m also interested in pursuing biomedical research. Fundamentally, I am intrigued by the immune system. With the advances in disease-modifying agents and with new immunotherapies, we can improve patients’ lives. That’s why I hope to follow my passion and become a rheumatologist, because to me it’s very rewarding to see my patients get back to their routine and enjoy their life.

Thanks to the generosity of our donors, Dr. Ratner will be able to follow her dreams and become a valuable addition to the number of new rheumatologists through this fellowship program.

 

Sisters by Birth, Friends by Choice

Lauren McAllister, Kristen’s big sister, found her role and urges other JA siblings to do the same.

“We’re lucky to be sisters, but we choose to be best friends,” says Lauren McAllister of her relationship with her sister, Kristen McAllister.

(L-R) Kristen & Lauren

Kristen began a long and painful journey with juvenile idiopathic arthritis 15 years ago, when she was 10 years old and Lauren was 12. It hasn’t been an easy road.

“It is devastating to watch someone you love have to fight a battle that doesn’t have a cure,” says Lauren. “Where the medications that are supposed to help don’t always help. To have the doctors who are supposed to ‘fix you’ not know what to do. It’s a feeling of helplessness. Not only can I not help her, but neither can the physicians who are supposed to be the ‘fixers.’”

Previously an active child, Kristen had to give up dancing, cheerleading and gymnastics — activities that she had grown up participating in with Lauren.

“Growing up, she would follow in my footsteps and do the same activities I did,” says Lauren. “We started dance, then gymnastics, which we got to do together. It was neat to have those experiences together.”

But arthritis changed their lives. Kristen could no longer follow in Lauren’s footsteps.

“I didn’t know how to walk her through it. I didn’t know what the right words were, and I couldn’t take the pain away,” Lauren says.

Kristen had to choose her own path in this challenging landscape, with Lauren by her side.

“She is unstoppable,” says Lauren. “She has made up in her mind that she’s not going to let this hold her back from doing the things she loves and wants to do. As a family, we’ve backed her 100%. We make it work. She will get out of her wheelchair and crawl upstairs in a restaurant, and we’ll bring the wheelchair around so she can get right back in it.”

(L-R) Lauren & Kristen take a stroll

Lauren goes on: “Something I really admire about her is that she has every reason under the sun to take herself out of situations, not partake in activities or go certain places because it’s harder or inconvenient. But she won’t allow herself to live that way. We’ve been so fortunate with the support of our friends and extended family. We’ve all just wanted her to experience the life a 25-year-old should experience.”

While Lauren and Kristen have chosen to be sisters, they’ve also chosen to take a specific outlook on life. “We choose joy,” says Lauren.

“It’s harder to do on some days than others, and it may be weeks or months later before you find it. But in every situation, we try to find the joy in it. We’ve been through some pretty dark times. But we’ve chosen joy. If you keep looking for it, you’ll eventually find it.”

Arthritis is a life-altering disease for 54 million Americans like Kristen and Lauren. You can help conquer it on Giving Tuesday. Your generous donation fuels life-changing research and resources right away.

Make a Donation. Change the future of arthritis.

Live Yes! With Arthritis Podcast-Episode 1

Everybody is talking about CBD these days. We are, too! Whether it’s health and beauty products, or foods, or even your local coffee shop, it seems everyone is getting in on the act. People take it for everything from anxiety and depression to pain and sleeplessness, even migraines. A growing number of people with all types of arthritis — from osteoarthritis to rheumatoid and psoriatic arthritis or fibromyalgia — say they’ve tried it or plan to. Continue reading Live Yes! With Arthritis Podcast-Episode 1

Dr. Rowland W. (Bing) Chang Becomes an ACR Master

On Saturday, Nov. 9, 2019, Rowland W. (Bing) Chang, MD, MPH, became one of 23 American College of Rheumatology (ACR) doctors to become an ACR Master. The designation of ACR Master is one of the highest honors ACR bestows. It is given to members, age 65 or older, who have made outstanding contributions to ACR and to the field of rheumatology through scholarly achievement and/or service to their patients, students and profession.

An active volunteer for the Arthritis Foundation, Dr. Chang has served on the national board of directors since 2006 (including board chair from 2016-2018). He is a past recipient of the Foundation’s highest tribute to volunteers, the Charles B. Harding Award for Distinguished Service.

Dr. Chang is noted for his clinical, epidemiologic and health services research focused on the outcomes of rehabilitation and surgical treatments for patients with arthritis. He is also interested in identifying the causes of functional limitations in clinical and community populations with arthritis.

As part of this interest, he worked with a research team that was among the first to identify sedentary behavior and the lack of physical activity as important risk factors for functional decline and the onset of disability in patients with knee osteoarthritis (OA). These studies have led to recommendations for scalable healthy physical activity and dietary interventions for those with or at risk of knee OA.

Dr. Chang started his work at Northwestern University Feinberg School of Medicine in Chicago in 1982, where he is currently a professor of preventive medicine, medicine and physical medicine and rehabilitation. Additionally, he leads doctors, nurse practitioners, physical and occupational therapists, clinical psychologists, social workers and other rehabilitation professionals in the care of arthritis patients at his clinical practice at the Shirley Ryan Ability Lab (formerly the Rehabilitation Institute of Chicago).

Dr. Chang earned his medical degree at Tufts University School of Medicine and his graduate public health education (MPH) at the Harvard School of Public Health. He completed a residency program at the Mount Auburn Hospital in Cambridge, Massachusetts, followed by rheumatology training at the Royal Postgraduate Medical School (Hammersmith Hospital) and a clinical/research rheumatology fellowship at the Brigham & Women’s Hospital.

New Mom Says Treat RA Like a Friend

A Miami native, Stephanie Aleite is a new mom who feels that her suffering from arthritis isn’t in vain. Instead, she shares her experience with others in hopes they will live a better life.

Stephanie was very surprised when she first heard she had juvenile arthritis as a young child. Until her late teens, she didn’t know she’d been diagnosed with JA at age 5, which started with a deformed finger on one hand and soon spread to her whole body.

She quickly started treatment that controlled her disease. “I was fortunate to respond so well to treatment that my disease went into remission for most of my teenage years. My parents thought my remission would last my whole life, so they had no reason to tell me about a disease they thought was part of my past.”

But Stephanie’s RA came roaring back with a vengeance at age 17. “My mom had to tell me, ‘Well, you had a little bit of arthritis when you were little.’ So I had grown up with the symptoms and pains of the disease, including several years of remission, yet never had a name for it.”

The Challenges of RA and Being a New Mom

Stephanie knows all too well that most people don’t realize how intense and complicated arthritis is. But she’s learned to accept their misperceptions. “It’s OK that they don’t fully understand. I don’t even understand it myself sometimes,” she admits. “The disease is so bad that it’s kind of unbelievable. The only way I can really describe something so complex is to explain that my immune system is attacking my body.”

A big obstacle Stephanie faces today is having trouble sleeping. “That’s the most basic kind of human need that RA gets in the middle of,” she says. “It’s hard to sleep when you can’t get comfortable because you’re in pain. Sometimes my back hurts so bad that I wish somebody would wring out my spine like a washcloth.” Stephanie says it’s hard to turn doorknobs and pick up a heavy pot of boiling water for pasta.

Her RA is especially tough around the holidays. “It’s stressful for anyone, even without arthritis. I love to cook, and usually people are pretty understanding that I’m not able to do everything or cook an entire feast for 20 people.”

Something harder for some to understand is that she can’t make it to all the holiday parties. A friend gave her sound advice to feel less overwhelmed: Just disappear quietly into another room when you need a short break. “You don’t have to be in it the whole time. I tried so hard to be all-in, all-perfect, all-visible. But it’s OK to show people your vulnerability. Take 15 minutes by yourself and relax a bit if you need to.”

Taking care of her son, Santiago, who just turned 1, can also be challenging. Carrying him, getting him into and out of his car seat or putting him into his stroller or a shopping cart can trigger pain. She tries to run errands on her husband’s day off so he can help.

No Longer on the Sidelines

Stephanie says having good communication with your health care team is vital. “I’m thankful to have an open, honest relationship with my doctor. Finding a doctor who views our relationship as a partnership has been pivotal. My experience has changed me from someone who sat on the sidelines in my fight against RA, to the girl in the ring, ready to kick RA in the teeth.”

Stephanie makes time to connect with others who also struggle with arthritis, including being a patient advocate and blogger. Before she became a mother, Stephanie led a local Live Yes! Connect Group, bringing together doctors and patients to talk about treatment goals and tools to bridge the gap between doctor visits.

Stephanie says all the Arthritis Foundation’s grassroots advocacy efforts comfort her. “The Arthritis Foundation is so committed to fighting for our rights in Washington and in states around the country. I don’t have time or don’t fully understand all the laws. Knowing they’ve got my back so I can spend time with my son is a big enough reason to donate.”

Though arthritis can be distracting, Stephanie finds plenty of other things to occupy her mind. Her interests include crocheting, gardening, writing and a big favorite: cooking. “Arthritis can prevent me from doing these things, but it’s not everything I think about or all my life revolves around.”

Stephanie shared these words of wisdom in one of her blogs: “Someone once told me that RA is like a friend who will be by your side for the rest of your life, and how I treat that friend determines how that friend treats me. So, I’ve learned I have to care for it, respect it and—occasionally—entertain it.”

Not Even Arthritis Can Slow Down This Female NASCAR Driver

Natalie Decker holds a fundraiser to benefit others with arthritis.

At the tender age of 5, Natalie Decker knew what she wanted to be when she grew up. Raised in Wisconsin, Natalie’s father, Chuck, ran a motor sports track that hosted the World Championship Snowmobile Derby. Natalie wasn’t much into snowmobiling, but she was mesmerized by go-karts and told her dad that her big dream was to race in NASCAR (National Association for Stock Car Auto Racing).

Today, at 22 and living in North Carolina, Natalie has made her dream come true, becoming one of the top young drivers in the NASCAR scene. Along the way, she has broken records and continues climbing the racing ladder as she aims to achieve more victories and accolades on short tracks across the country. Last year, she was the highest finishing female on a superspeedway in Automobile Racing Club of America competition, taking fifth place. Her biggest dream is making the Cup Series, NASCAR’s top racing category.

What makes her victories even more impressive is that Natalie grew up with childhood arthritis, which she has battled since birth. After keeping quiet about her illness most of her life, afraid of being perceived as weak, she recently revealed her illness to the world and announced on her social media channels the fundraiser she’s doing to support the Arthritis Foundation. She’ll announce it again in person to her fans at the Homestead Miami-Speedway’s NASCAR season finale on Nov. 15.

Fans were able to buy a spot on the hood of Natalie’s No. 54 DGR-Crosley Toyota Tundra. Donations are still welcome, and those who donate will still receive swag that’s exclusive to the fundraiser. The hood will be auctioned off after the race, along with Natalie’s race-worn Fyshe Fire Suit, Arai helmet, racing boots, gloves and a special jacket. All proceeds from the fundraiser will help raise awareness and funds for the Arthritis Foundation’s mission, fueling research for a cure as well as resources and support for those of all ages who struggle with the disease, including life-changing juvenile arthritis camps nationwide.

We recently caught up with Natalie before the big upcoming race.

Q: What was it like growing up with arthritis?

A: I was born with it and was diagnosed at age 2. I had problems with my jaw and other joints. I took a high dosage of a chemo drug once a week for over 10 years. It made me very tired and gave me headaches. I always felt sick and nauseous. When I was young, my arms were locked at a 45-degree angle, and it took a while to straighten them all the way. My knees were always so swollen. At about 12 years old, I went into remission and got off the med.

Q: Were you unable to do certain things?

A: My pediatrician told me he couldn’t believe all I could do as a child. I was doing all these sports, whether it was dance, hockey, soccer, and I was just getting into go-kart racing at age 9. He told me, “I don’t know how you’re doing these things. It should be physically impossible.”

Q: Did you have any past involvement with the Arthritis Foundation?

A: I really wish I did, but I didn’t. I don’t think my parents knew about the Arthritis Foundation and the benefits they provide, and we were always so busy. Arthritis Foundation camps for kids with JA are so cool. Being involved in those camps would have helped me so much. Through this current fundraiser, we want to help more kids be part of that.

Q: What’s most thrilling about racing?

A: Growing up, my family and extended family would travel all over on the weekends to racing events. I loved it. From my first go-kart, I wanted to work really hard to get into NASCAR. It’s been a lot of work but so much fun. Everyone you meet becomes family. Racing is still a male-dominated sport, so it’s really cool to see how that’s changing. It’s no longer weird to be a girl in the racing arena.

Q: Isn’t racing dangerous?

A: With all the NASCAR rules they have and the gear I wear, I feel that racing is really safer than driving on the highway.

Q: What do you say to other girls, including those with a chronic disease like arthritis, to encourage them?

A: Whoever you are and whatever you want to do, do it because you want to and love it. Whatever you put your mind to, you can absolutely do it. Get a great support system. You need to have others supporting you. When you fall on your face, you can pick yourself up with the support of others. It’s so inspiring to tell other girls that they can do anything.

Q: Have you gotten respect in your field?

A: Yes, and I’ve earned it. The easiest way to earn respect in racing is to race your race, race clean and do well. Win races the right way. Be the best you can be and be nice. Be yourself, male or female, and respect others.

Q: You recently flew with the Thunderbirds. What was that like?

A: That was absolutely amazing. I never thought in a million years I would ever do that. I ran into a Thunderbird crew in Daytona, then we connected again in Vegas, and I got to fly with them, which was another dream come true.

Q: Does arthritis affect you today?

A: I came out of remission not long ago. The pain and stiffness now are 10 times worse than when I was younger. I have to take care of myself. When I need to sit down or take a break, I do. Even when you’re racing in your car, for hours at a time in one position, that can be really painful. I have to be really prepared, recover fast and know what I can and can’t do in the gym. This past year, I went to the eye doctor and was told my eyes are drier than someone who’s 80 years old. I’ve gotten a med for that because having dry eyes is really painful. I want to start infusions, like a lot of patients with rheumatoid arthritis, and will start that soon.

Q: Tell us about your arthritis fundraiser.

A: We want to help more kids go to camp and advance arthritis research. I’m so thankful the Arthritis Foundation gives people with arthritis the resources, local programs and support they need, so they can chase their dreams, like becoming a NASCAR driver, and live a full life. I was very nervous about sharing my story for a long time. But I’m so happy I’m finally sharing it to help and be an inspiration to others. Though I’ve learned to work through the condition’s hardships, it pains me to know what these kids go through every day. We need the public’s help, and together we can change lives!

 

OA Patient Guidelines

Working to Develop OA Patient-Centric Guidelines

The Arthritis Foundation is proud to have partnered with the American College of Rheumatology (ACR) on the release of new guidelines for the management of osteoarthritis (OA) of the hand, knee, and hip. The guideline process included input from OA patients, which was made possible through the Arthritis Foundation and ACR partnership.

“Traditionally, the patient voice has been invoked, but not always present, as guidelines are developed,” said Guy Eakin, Senior Vice President of Scientific Strategy for the Arthritis Foundation. “Through our partnership we were able to marry the ACR rheumatology expertise with the Live Yes! patient community to pioneer a process assuring guidelines that treat patients reflect the unique perspectives of the patients who will receive them.”

The new guidelines were presented as part of the 2019 ACR/Association of Rheumatology Professionals (ARP) Annual Meeting held in Atlanta on November to discuss the process of how the guidelines were developed and the results.

“We are proud to have been involved in this work and to facilitate the important contributions of the patient partners,” said Cindy McDaniel, Arthritis Foundation’s Senior Vice President of Consumer Affairs. “Their lived experiences truly helped to guide this project.”

The draft guidelines include the following Strong Recommendations, for which there is strong evidence for benefits, clearly outweighing harms for almost all OA patients:

  • Educational, behavioral, and psychosocial approaches:
    • Weight loss, especially for those with hip and knee OA.
    • Self-efficacy, self-management programs to help build skills like fitness and exercise goal‑setting, problem-solving, and positive thinking.
  • Mind-body and physical approaches:
    • Exercise: aerobic, strengthening, neuromuscular, and aquatic exercise are all recommended.
      Note: exercise may be more effective if supervised, so patients may consider supervision by a physical therapist.
    • Tai-chi, especially for those with hip and knee OA.
    • Medical devices and aids: Use of canes (for hip and knee OA), orthotic devices, and wrist braces.
  • Pharmacological approaches
    • Topical non-steroidal anti-inflammatory drugs (NSAIDs, especially for knees)
    • Oral NSAIDs
    • Intra-articular steroid injections (knee, hip)
    • Imaging guidance for injections (hip)

The draft guidelines include the following Conditional Recommendations, for which there is less evidence that benefits may outweigh harms, for a majority of OA patients:

  • Educational, behavioral, and psychosocial approaches:
    • Cognitive behavioral therapy.
  • Mind-body and physical approaches:
    • Yoga, especially for those with knee OA.
    • Balance training, especially for those with hip and knee OA.
    • Medical devices and aids: Use thermal interventions, radio‑frequency ablation (knee), medical tape, orthotic devices, acupuncture, and knee braces.
  • Pharmacological approaches
    • Topical NSAIDs (hand)
    • Topical capsaicin (knee)
    • Intra-articular steroid injections (hand)
    • Intra-articular steroid injection over other injectables
    • Chondroitin sulfate (hand)
    • Acetaminophen
    • Duloxetine (knee)
    • Tramadol

Learn more by reading the paper containing the full list of recommendations and supporting evidence.

Aside from recruiting patients to participate in the development of these guidelines, the Arthritis Foundation also brought nine arthritis patient partners to the 2019 annual meeting to help elevate the patient voice and perspective.

The meeting was attended by close to 16,000 rheumatologists and other rheumatology healthcare professionals, researchers, fellows in training and exhibitors from more than 100 countries gathered to learn about the latest scientific advances, clinical issues, and engage in professional development.

Join the Live Yes! Arthritis Network FOR FREE. Our community is here to help you.

 

Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

The Patient Voice in Action
November 13, 2019

Today during #ACR19, our Patient Partners were able to see why having the opportunity to provide patient input can make a difference. Here’s the daily dose of what they learned as the meeting wraps up today & why it matters for people with arthritis.

Patient Engagement in New OA Guidelines
New draft guidelines for the treatment of osteoarthritis (OA) were released and discussed during a presentation today. I appreciated the ACR partnering with the Arthritis Foundation to provide patient input in this process. Although I was not one of the patients on the task force, I was glad to be attending this session in person where they officially released this new information. It provided me the opportunity as a patient to provide feedback and ask a question about the guidelines since I live with osteoarthritis.

“It’s important as patients that we are able to provide input on these types of guidelines, since we’re the ones living with the daily pain.” – Raquel Masco

 

The new guidelines provide an update on what the latest research supports as far as treatment for OA. I had the opportunity to ask why massage is listed as a treatment the research is “conditionally against” for hip and knee OA, especially because I love a good massage. Basically, it can be an effective treatment for some people, but not everyone and this is all based on what quality research is available to support it. Unfortunately, there’s not a lot of good research when it comes to massage for hip and knee OA. It doesn’t mean I won’t still go or that people shouldn’t if it helps you. A lot of the things the guidelines are conditionally against seem to be a big point of discussion for why more research is needed.

That’s why it’s so important for us as patients to raise our voices, raise awareness and raise funding to support more research for arthritis.
By: Raquel Masco

Arthritis Foundation Patient Partners shared their stories in the exhibit booth at the ACR annual meeting. (Pictured from left: Raquel Masco, Kevin Purcell, Shannan O’Hara-Levi and Ife Okwumabua) 

Managing the Difficult-To-Treat RA Cases
During a session titled – How do I manage this Patient? Difficult-To-Treat RA Cases, a panel of rheumatologists discussed crowd-sourced questions regarding multi-level patient needs within the rheumatology practice. As a patient listening in to this discussion, I was interested to hear the vast difference between the rheumatology panel and how they would treat a specific patient.

The discussion of steroid use is a hot topic, as multiple other sessions really focused on this, and was mentioned on this panel. The panelists mostly agreed that prednisone use is a very individualized decision in the course of treatment. The use of steroids among this group is recommended to be in short durations and usually often only used short-term while waiting for other interventions to take effect.

This panel also explored patients of child-bearing age and the use of methotrexate. Interestingly, the topic of methotrexate being prescribed to a male who was attempting to start a family was also discussed and had varying recommendations throughout the panelists. It is widely known that methotrexate is contraindicated in female patients who plan to become pregnant, but biologics are prescribed. This was an important topic especially in a newly diagnosed patient as reimbursement requirements vary for prescribed medications.

 “As a patient, my takeaway from this session was the importance of being an informed patient.” – Shannan O’Hara-Levi

On the panel it was mentioned that there are specific models that rheumatologists usually need to follow however, one stated that there is patient to patient variation and models do not always fit. This seems like a no-brainer to me, however, due to insurance issues, legislation and cost driven intervention, this is a major patient/doctor concern. Price of treatment, especially in newly diagnosed patients and those with specific insurance regulations, is a driving factor to treatment.

Having the opportunity to be here to see these medical professionals’ debate and learn from each other is an amazing experience. Research is constantly changing, and the field of rheumatology is constantly expanding and growing. My recommendation to other patients like me is to ask questions. If something doesn’t feel right to you, then speak up to your rheumatologist.
By Shannan O’Hara-Levi

We’ll recap all the highlights from the Arthritis Foundation Patient Partners from their time at the American College of Rheumatology annual meeting, so stay tuned. Check out the other ACR Daily Dose blogs to read more from the patient perspectives.

Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

Patient Voices that Take ACR from Theory to Reality
November 12, 2019

Today during #ACR19, our Patient Partners were able to connect with rheumatologists and researchers about the ways that their stories can inform their work. Here’s the daily dose of what they learned & why it matters for people with arthritis.

Perspectives on Patient Engagement in Research

Patients and their caregivers are the experts in their experience – and that expertise is valuable to providers and researchers as they investigate new therapies. Today, we got to hear from excellent speakers about the value of sharing our patient perspectives – and the many ways that we can be empowered to tell our stories.

 “True patient engagement is providing patients an opportunity to help you BUILD the box, not just check it.” – Corinne Pinter

We learned that it is not just providing a patient testimony or sharing an idea about how things can be better. Sharing our stories can be as simple as taking a survey, like the Arthritis Foundation INSIGHTS assessment. It was so inspiring to hear about the more than 20,000 INSIGHTS assessments that the Arthritis Foundation has collected and the ways that that information can help our doctors deliver care.

The more that we are able to share our stories, the more we are able to help others understand why patient engagement is so important.

“I’ve seen my story make a difference for researchers through the relationship that the Arthritis Foundation has with the PARTNERS like CARRA & PR-COIN.” – Kate Kuhns

By: Corinne Pinter and Kate Kuhns

Track Your Wonder Drug with a Wearable Device
Exercise: the Wonder Drug

There’s a lot of research to support physical activity as being one of the most beneficial treatments for people with all types of arthritis. I learned the research shows the most benefits for those who exercised longer than 3 months. It helps to reduce inflammation, pain, stiffness and fatigue in many patients. For people with osteoarthritis like me, if you’re overweight, losing the extra weight is so important. Another motivating reason to exercise is the 40-60% increased risk for cardiovascular diseases when you have a rheumatic condition. These are the reasons we’re at a higher risk for cardiovascular issues:

  • Inactivity
  • Being overweight
  • Systemic inflammation
  • Age, pain, sleep (not enough sleep, poor quality sleep)
  • Lack of physical activity support

One of the researchers discussed High Intensity Interval Training (HIIT), which peaked my attention. HITT combines vigorous activity of high intensity training, but not high impact, with short intermittent breaks to rest. This type of workout showed similar physiological benefits compared to less intense exercise with a long duration. The research showed changes occurred in as little as two weeks. I can attest to the benefits of HIIT personally.

 “I started doing HIIT training myself about a year ago. That along with proper diet helped me to lose weight and maintain weight loss to the point where I can have a more active lifestyle.” – Nick Steen

Wearable Technologies Can Help Increase Physical Activity
Another session I attended also discussed the importance of physical activity when you have a form of arthritis. Having wearable technology helps to hold ourselves accountable to maintaining physical activity levels. One of the researchers reported that the wearable devices (like Fitbit or pedometers) helped to increase the number of steps that people took and increase their activity levels. It’s a good way to actually change behaviors when it comes to exercise.
By Nick Steen

A Public Approach to Arthritis Pain
By Stacy Courtnay

There’s growing attention to chronic pain in public health and this is good for people living with arthritis and rheumatic conditions. This session really spoke to my passion in raising awareness about how hard it can be to live with rheumatoid arthritis. We need to speak up and educate others on arthritis and how debilitating it is. The more awareness we can bring, the more funding we can get and this can bring us closer to a cure.

“This is so important to me and our mission at the Arthritis Foundation. Do not suffer in silence!  Share your story.”  – Stacy Courtnay

Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they wrap up their time at the American College of Rheumatology annual meeting. Check out them out on Twitter, Facebook and Instagram as they share information throughout the day while they represent your patient voice.