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
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.
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.”
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!
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.
- Exercise: aerobic, strengthening, neuromuscular, and aquatic exercise are all recommended.
- 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)
- Duloxetine (knee)
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.
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.
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
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.
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.
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:
- 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.
It’s been a busy time learning and listening so far for the Arthritis Foundation Patient Partners. Here’s a daily dose of what they are hearing about in all the latest research and treatments available for people with arthritis.
Veteran’s Day – November 11, 2019
Arthritis in the Military
Raising awareness for our veterans and military service members with osteoarthritis is important to Patient Partner Nick Steen. He shared his story at a luncheon to highlight the importance of continued research, education and advocacy for helping those who serve our country and develop osteoarthritis.
“My daughter and I share our arthritis journey together. We are partners that tackle arthritis together.”
Not only does Nick live with OA, his daughter has juvenile idiopathic arthritis, so fighting arthritis means so much to him and his family. Read more about Nick’s journey here.
It’s Not Just Physical
Patient Partner Raquel Masco attended a session on Pain, Anxiety & Depression. The session highlighted the need for taking a closer look at the mental health aspects of coping with inflammatory arthritis.
“It was very interesting to see the numbers on how companionship and good healthcare matter.”
I was especially interested in the information shared on Lupus and black women, as they discussed predictors of mortality for women like me. It’s so important to have resources for people to understand and navigate their disease.
By Raquel Masco
Family Planning, Pregnancy & Rheumatic Conditions
Patient Partner Mariah Leach of Mamas Facing Forward has been excited to have more information related to family planning, pregnancy and arthritis this year, so she can share the latest information with her support group. Here’s a summary of what Mariah has learned so far:
Contraception and Fertility: Dr. Mehret Birru Talabi
This session sought to recognize which contraceptives are safe and effective for women living with lupus. It also touched on fertility and appropriate assistive reproductive technologies for women with lupus.
Patients don’t expect their rheumatologists to be experts in contraception, but Dr. Talabi pointed out patients do want guidance from their rheumatologists on the best way to safely achieve their reproductive goals – whether that’s prevention or pregnancy.
Dr. Talabi emphasized that every woman with SLE can find effective and safe contraception. Based on my personal knowledge of how important pregnancy planning is when you are living with a chronic illness, I hope that doctors will feel encouraged to discuss this topic with their patients, and that patients will feel empowered to choose an effective form of contraception as part of their family planning.
Dr. Talabi shared that infertility isn’t common in women with SLE, but that if women with SLE do struggle with getting pregnant, assistive reproductive technologies are safe.
Medications in Pregnancy and Lactation: Dr. Bonnie Bermas
When a woman with lupus wants to become pregnant, Dr. Bermas stressed that the best outcomes for mother and baby are when pregnancies happen in a planned and controlled manner.
Dr. Bermas discussed which SLE medications are safe for use during pregnancy. In particular, she cited studies that show hydroxychloroquine (HCQ) actually improves SLE pregnancy outcomes. I think this type of data/knowledge is particularly important for doctors to have, to help patients overcome the pressure from society that it’s “always” better for the baby if women are unmedicated during pregnancy.
Honest and Accurate Conversations to Plan Lupus Pregnancies: Dr. Megan E Clowse
This session focused on how doctors interview their patients with lupus about pregnancy issues. Dr. Clowse shared the HOP-STEP (Healthy Outcomes in Pregnancy with SLE Through Education of Providers) program that can help doctors with these important conversations.
Dr. Clowse used videos to illustrate the importance of doctors asking their patients open-ended, encouraging questions. For example, if a patient is asked “you’re taking your birth control, right?” many patients may feel they have no choice but to answer yes even if they’d like to plan a pregnancy. Dr. Clowse recommended rephrasing this question as “do you have any plans to start a family in the next year?” which is open ended and gives the doctor a starting point for a pregnancy planning conversation if that’s what the patient wants.
The takeaway from this presentation was the importance of collaboration between doctor and patient when it comes to planning a pregnancy. Patients need to feel comfortable bringing up pregnancy and empowered to be involved in pregnancy planning. Doctors need to be open and non-adversarial, encouraging collaboration instead of simply telling patients what to do. If a woman with lupus is interested in pregnancy, the doctor and patient need to be on the same team with the joint goal of planning for the safest possible pregnancy.
By Mariah Z. Leach, Mamas Facing Forward
Cardiovascular Risk & RA
Patient Partner Cheryl Crow looks through two different lenses as she attends information sessions – a patient with RA and an occupational therapist. She knows the importance of physical activity in managing RA and the risks for cardiovascular diseases.
“It’s always a little scary to learn that your lifespan might be affected by your disease. Sometimes this information makes me feel more invigorated to live my life to the fullest, and other times it makes me a little sad. How long will I be alive to see my son grow up?”
There were several Interesting facts I learned in a session on cardiovascular risk & RA.
- Physical inactivity is a risk factor for cardiovascular disease in the RA population
- People with RA have an increased risk of mortality related to cardiovascular disease – there’s no model that FULLY explains the risk of cardiovascular disease in this population currently.
- A pharmacist talked about the medications we take for RA and whether they might be the reason for the increased risk.
- The pharmacist works in an integrated clinic and found huge gains when physical therapy is integrated with RA.
It was interesting to learn that physical activity is important for RA not *just* from the joint health perspective (which I knew as an OT), but also from a cardiovascular health standpoint. This definitely made me feel more invigorated to incorporate more cardiovascular exercise into my daily routine – I used to do a lot of running and swing dancing but I’ve gotten out of the habit after having my son and having a few other issues like a car accident that led to whiplash and a concussion!
“If every (implied rheumatology) clinic could have a physical therapist within it, that would be the ideal” – pharmacist, Leticia A Shea PharmD. I agree with this but would just add that occupational therapy would be ideal to work not on exercise but on fatigue management and strategies to successfully complete meaningful activities of daily living (from walking the dog to cooking dinner).
By Cheryl Crow, OTR, Arthritis Life
Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they learn more 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.
My name is Nick Steen, I’m a military veteran, an osteoarthritis patient, and a JA Dad. This Veteran’s Day – I’m representing my family’s arthritis experience at the American College of Rheumatology’s Annual Meeting. As an Arthritis Foundation Patient Partner at the meeting, I get to teach the participants about why it is so important to listen to patient experiences in health care delivery and design.
I joined the Army right out of high school in 1994. Four years later, I was honorably discharged. My time in the military gave me so much, I learned how to be a leader, how to save lives, and I learned that I had osteoarthritis.
My primary job in the Army was that of a heavy machine gunner, which meant I was either carrying a 30-pound gun or approximately 600 rounds of ammunition that often weighed over 50 pounds in addition to the normal load.
As you can imagine, jumping out of airplanes with this type of weight often made me turn into an anchor as I crashed to the ground. My training pushed my joints to their limit.
“I served my country proudly and I would do it again. But I am concerned that my choices to help keep this country safe have now caught up to me in the form of osteoarthritis.”
There were times that I considered my osteoarthritis as a sign of weakness, or something I deserved for not taking care of my body. For a while, I even refused to take the pills prescribed by the VA to treat my pain. In the end I probably did more damage than good by trying to ignore my OA.
But that all changed for me when my daughter was just 18 months old and her doctor diagnosed her with juvenile idiopathic arthritis. All the sudden, arthritis was a part of my family’s story in a brand new way.
My daughter and I share our arthritis journey together. She has essentially lived her entire life with this disease, and my adult life has been shaped the same way. We are partners that tackle arthritis together, encouraging each other when we flare and celebrating together when we overcome the challenges of our disease.
My daughter is a teenager now – and with the high school territory, our conversations can be few and far between. But there is one thing that we still have in common & will always feel open discussing: our arthritis.
“In sharing my experience with my daughter, my partner in this journey, I have come to learn that this disease is not a sign of weakness. This disease does not care who you are or what you’ve done. It attacks us all – and so we all must take a stand against it together. “
Sharing my story with my community has helped me tremendously. It took me close to ten years before I was ready, but when you are sharing, your experience can really help you along your way. My daughter and I discuss our experience with each other, with our community, with our country to help raise awareness and advocate for a cure.
We have worked hard to raise our voices and advocate to find new treatments and a cure for people with arthritis. And you can too. In just five minutes or less, you can send a letter to your members of Congress to encourage federal investments in research for a cure. Whether you’re a veteran, advocating for funding for a standalone arthritis research program at the Department of Defense – or a parent, hoping to increase the presence of the CDC arthritis program across our country, you can make a difference.
By Natalie E . Azar, MD
Assistant Professor of Medicine and Rheumatology
NYU Langone Medical Center
It was an honor for me to speak at the Arthritis Foundation reception in Atlanta to kick off a week of learning about what’s new and happening in the world of rheumatology.
One of the things I enjoy most about being a rheumatologist is developing relationships with my patients. Since rheumatic diseases can be complex and unique to each person, I spend a lot of time with my patients, over a long period of time. It’s important to me to take the time to listen to their needs. That’s why I focused on elevating the patient voice in silent rheumatic diseases for my keynote address.
Often, patients don’t feel like they are being heard by their healthcare providers, but they are the experts in how they feel and what’s most important to them.
As an NBC News Medical Contributor and Assistant Professor of Rheumatology at NYU Langone, I try to increase awareness about the impact that rheumatic diseases have on the daily lives of patients. It can be such a struggle, especially when it is often hard to see the symptoms. That’s why many patients feel like they have an invisible disease. Fatigue is one of the most difficult symptoms to address in rheumatic diseases, but it cannot be ignored.
Some key takeaways from my presentation for my fellow healthcare providers:
- We need to pay closer attention to all symptoms, especially to ones that may seem “non-clinical,” for example, complaints of fatigue, stress and anxiety. These symptoms may be overlooked or considered a symptom of the main diagnosis (i.e. Lupus, RA,). However, they can severely limit a patient’s ability to perform their daily tasks and make it more difficult to manage the disease.
- As providers, we want the best medical outcomes and quality of life for our patients. Validating the patient experience and educating them about their disease will increase their understanding of direct and indirect symptoms. This knowledge will empower patients to recognize early warning signs of symptoms that worsen their disease, persist for an extended time or weaken their ability to cope.
- We need to empower the patient to trust his/her own experiences and use his/her symptoms as early warning devices to avoid a worsening condition, especially when it comes to fatigue.
If you’re a patient with a rheumatic condition, please, don’t stay silent about your fatigue symptoms. Speak up and advocate for yourself. You are the expert of your body and your pain.
- Keep talking to your doctor about your fatigue symptoms and any post-exertion malaise. Don’t ignore these symptoms.
- Try to keep an activity log to monitor how you’re feel after performing various activities so you can track any persistent fatigue symptoms.
- Get educated about pacing and energy conservation for daily self-management of your fatigue. A referral to an occupational therapist could help you determine what works best for your schedule.
“Fostering open lines of communication between the doctor and patient is key to addressing the silent complaints in rheumatic diseases. Also vitally important, is making sure you can advocate for yourself.”
I had the pleasure of meeting an amazing patient advocate, Shannan O’Hara-Levi, at the reception and learned more about her story of growing up with arthritis. She’s sharing her story at the annual meeting with a patient poster abstract to validate and elevate the importance of the patient voice in discussions among health care providers, patient advocates and related organizations at important meetings such as this one. Meet this fierce advocate committed to raising her voice for people living with arthritis just like her.
Representing the Patient Voice
By Shannan O’Hara-Levi
It’s exciting to represent the Arthritis Foundation community at the American College of Rheumatology Annual Meeting in Atlanta. I’m proud to share my story at this important conference to help elevate the patient voice, like Dr. Natalie Azar spoke about.
I am honored to be a Patient Poster presenter at this meeting.
“It’s truly powerful as a patient to attend this event and tell my story. Including patients in the conversation as a norm is a powerful way to improve outcomes and influence the direction of research, treatment guidelines and resource development.”
I welcome a seat at the table and sincerely hope that this program continues and grows to include more patient voices.
Navigating our journey of living with arthritis is not an easy thing to do, but we do it every minute of every day. This year at the Arthritis Foundation booth, I’ll be joined by eight other patients with different types of arthritis and life experiences as we talk about the most important partner in our journey with arthritis.
It’s so important to have a good support system and I’m fortunate to have my husband, Dustin as my partner in the journey. He is an active partner in my daily self-care to manage my arthritis. I wake up every day, not knowing how I’ll feel or what kind of pain I might have, but my husband is the one constant in my daily life. He always encourages me to put my health first.
I’m excited to share some big news for our arthritis community – a new podcast from the Arthritis Foundation is coming! Tune in to the conversation and become empowered with the Live Yes! With Arthritis podcast. Hosted by patients for patients.
Go to www.arthritis.org/LiveYesPodcast to check out the trailer preview! The first episode will be out on November 19th. Stay tuned!