Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

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

Arthritis Foundation Patient Partners

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

Arthritis Foundation Patient PartnersPatient 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
Arthritis Foundation Patient PartnersPatient 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.



Raising the Patient Voice in the Military

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.

Stand with my family, and the many families like mine, to advocate for a cure. Take action today.



Elevating the Patient Voice

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 to check out the trailer preview! The first episode will be out on November 19th. Stay tuned!

Meet Our Newest UCSF Fellow!

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. The University of California, San Francisco (UCSF) recently announced the recipient of the Arthritis Foundation’s Charles F. and Marilyn Meier Pediatric Rheumatology Fellowship fund award. This award is specifically given to pediatric fellowship students at UCSF. The 2019-2020 award goes to William D. Soulsby, III, MD. Continue reading Meet Our Newest UCSF Fellow!

Personalized Care Management to Achieve Outcomes Important to Patients

Our Collaborating With Patients for Better Health science initiative has been getting more attention. The National Health Council (NHC) has asked Arthritis Foundation Senior Vice President Guy Eakin, PhD, to speak to members of the Science of Patient Engagement Symposium Planning Committee about the challenges of helping patients learn to communicate with their health care providers and become partners in the decision making process to achieve personalized care management. Continue reading Personalized Care Management to Achieve Outcomes Important to Patients

Iris Jordan

Iris Jordan – 2019 Jingle Bell Run National Youth Honoree

Since age 7, Iris Jordan has been living and thriving with polyarticular juvenile idiopathic arthritis, along with other medical conditions that were diagnosed when she was 9: Ehlers-Danlos hypermobility syndrome and pain amplification syndrome. Now 15 and a high school sophomore, Iris endures what most teens can’t even imagine. Yet despite her daily challenges, she has exceptional tenacity, pursuing the things that give her joy while navigating unpredictable pain and fatigue. Continue reading Iris Jordan – 2019 Jingle Bell Run National Youth Honoree

Meet Uptej Khalsa: 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. Stanford University recently announced the recipient of the Arthritis Foundation’s Jessica Saal Bequest. This 2019-20 award is specifically awarded to a pediatric fellowship student at Stanford University. Congratulations to recipient Uptej Khalsa, MD! Continue reading Meet Uptej Khalsa: One of Our Newest Foundation-sponsored Fellows!

World Arthritis Day

World Arthritis Day 2019

Join the Community, Expand the Movement
Although arthritis is one of the most common diseases in the world, most people haven’t heard much about it. Or they don’t know what it really is or how it affects those who live with it. In a Harris Poll of 2,000 adults in the U.S. on behalf of the Arthritis Foundation, only 7% of them knew that arthritis is the country’s #1 cause of disability. A whopping 85% said the disease needs more attention.

As someone who lives with arthritis every day, you can help elevate arthritis awareness on Oct. 12 — World Arthritis Day. While arthritis is 24/7/365, this is a special day to remember the disease’s far-reaching impact. Continue reading World Arthritis Day 2019

Bonnie Simpson Mason

Bonnie Simpson Mason Used to Mend Bones. Now She Nurtures Dreams.

Bonnie Simpson Mason, MD, faces the conference room in a power pose, hands on hips, and the medical students rise from their seats to copy her stance. Poised and confident, genial but firm, she shares her tips for success: “Be an initiator. Be a problem-solver. Be resourceful. Be that person who’s there early, who stays late, who’s always enthusiastic.” Continue reading Bonnie Simpson Mason Used to Mend Bones. Now She Nurtures Dreams.

Open Enrollment: Q&A to Help You Get Ready

Hi! I’m Tara, and I’m a social worker for the Arthritis Foundation Helpline. When I’m not at work, you can usually find me in the garden. Over more than 20 years as a social worker, I’ve had many roles helping people. At the Arthritis Foundation. I’ve answered thousands of questions about arthritis, how to manage it and the best ways to get and pay for care. Continue reading Open Enrollment: Q&A to Help You Get Ready