All posts by Arthritis Foundation

From Patient to Patient Leader: Every Voice Counts

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

By Sarah Cloud | Sept. 1, 2021

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

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

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

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

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

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

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

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

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

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

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

Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can apply HERE. Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word! 

Chef Michael Symon’s Recipe for Easing Arthritis Pain

On cooking shows like The Chew and Burgers, Brew and Que, the charismatic Chef Michael Symon, with his signature bald head and contagious smile, whips up mouth-watering dishes with what seems like boundless energy and enthusiasm. What’s not so apparent are his painful hands, aching knees and ankles, and lurking fatigue.

Symon, 51, was diagnosed in his 20s with rheumatoid arthritis (RA) and discoid lupus, a form of lupus that primarily affects the skin, but also the joints.

“Literally one morning I woke up with these two enormous butterfly splotches under my eyes,” Symon recalls. At first, he and his dermatologist focused on managing the lupus by staying out of the sun. But when his joint symptoms persisted, his dermatologist sent him to a rheumatologist, who diagnosed RA.

Growing (Older) Pains

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

Symon’s arthritis pain and stiffness affects his ankles, knees, elbows, wrists, and hands. Some of his joint issues stem from broken ankles and reconstructive elbow surgery from wrestling in high school and college – the reason he insisted his own son choose a different sport, he says with a laugh. The pain in his hands is worsened by “30-plus years of cooking, holding a knife butchering – doing a lot of that in coolers, 35-degree temperatures,” he says. Now that he has others do the precise cutting needed in the restaurants, he’s more than happy to give his hands a break at home by buying precut produce and using a food processor.

His primary care doctor suspects he also has osteoarthritis. “’There’ll be a point where you’ll have to get both knees [replaced], and your hips aren’t great either,’” he told Symon.

As Symon got older, he found himself taking increasing amounts of over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs). “When you’re younger, you tend to grunt through some pains more. As I got older, I don’t know if the aches and pains increased or my pain tolerance decreased – one of the two [happened],” he says.

His Personalized Pain Therapy

Symon, whose grandmother had RA, knows the disease will continue to cause damage if he doesn’t take a disease-modifying medication to address it. “My grandmother, by the time she passed, it was crippling. I understand that certainly is something the future may have for me, but at [my age], I’m going to continue to do things as best as I can and still continue to enjoy it,” he says.

Instead — and counter to most medical professionals’ advice — he has leveraged his own professional knowledge to try to manage his overall health and arthritis through diet – with mixed results. He tried a vegan diet (he wasn’t a fan, although his wife is vegetarian) to try to lower the tendency to high cholesterol he inherited, but it didn’t budge his numbers. He ended up taking a cholesterol-lowering medication.

But for his RA, he focused on reducing the foods that cause his joint pain to escalate. His hands are a little “crooked,” he says, but he can generally manage the pain.

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

“I’ve thought about taking something for the RA, but there’s a point [where] I’ve been able to control the pain, I’ve found, with diet. So – right, wrong or indifferent – my choice would always be to take less medication,” he says. “I started playing around with my diet to see if I  could reduce the aches and inflammation through diet. That’s what led to me trying to figure out what my own personal triggers were that affect how I feel.”

It also led to a new cookbook he co-authored, Fix It With Food: More Than 123 Recipes to Address Autoimmune Issues and Inflammation, released in late 2019. He is currently working on another volume of Fix It With Food, which will be released in November 2021.

The recipes are simple, even for those of us who are not savvy in the kitchen. “There’s a sweet potato and coconut stew in there that is really easy to make. Sweet potatoes are easy to find diced in the store and so are the rest of the ingredients,” he says. “You put everything in a pot and let it simmer and it tastes great. It’s probably my favorite recipe in the book from a flavor standpoint, and it’s not a lot of work to get a meal that feels special.”

Modifying his diet has eliminated about 80% of his joint pain, but “it’s not a cure, it’s maintenance.” And it only helps if he sticks with it.

Unfortunately for Symon, who has a particular love for cheeses and other dairy products, he discovered that what triggers his arthritis symptoms most are sugar and dairy. So now, instead of eating ice cream three times a week, he’ll indulge in ice cream (“a double whammy because it’s sugar and dairy,” he says) or cheese every couple of weeks.

“I’ve learned that dairy makes me feel pretty [bad]. That being said, ice cream makes me feel pretty happy, so there are times where I make a decision [that] I’m going to have the ice cream, and tomorrow I’m just not going to feel great,” he says.

“If I do the right things, I feel great on a daily basis. In the early years of me having [arthritis pain], I’d get aggravated by it and try to push through,” he says. “Now I understand I have to live a certain way to feel better. Instead of getting frustrated, I just get back on track now.”

Adjusting to the Pandemic

During the pandemic, he hasn’t been eating as healthfully as usual — “more stress eating than normal,” he says. He owns and/or manages 15 restaurants, which have had to adapt to the pandemic strictures and economic consequences. The majority are back open but are now facing shortages of protective gear and challenges of winter weather.

Filming for Food Network has also changed dramatically for him. He already had given up intense competitions like Iron Chef, but he’s a regular on other shows and has his own string of productions as well. He shot the latest, Symon’s Dinners, with help from his culinary director and social media manager on a cell phone at his home. “In 25 years of doing TV, that was a first,” he says, laughing. “The shows actually came out really good.”

As a chef and restaurateur, he’s typically constantly on his feet and moving. “There’s rarely a day that I take less than 20,000 steps,” he says. With the pandemic, he isn’t on site in the restaurants as much, but a puppy he and his wife adopted earlier this year is helping him make up any shortage of activity.

“We’ve always had mastiffs and those kinds of dogs that you walk them to the end of the driveway and they’re exhausted. This is our first terrier. I walk him two or three times a day and he’s never tired,” Symon says, so he still clocks more than 20,000 steps a day. “I try to play golf twice a week just to keep my mind straight,” he adds, and “I do a lot of stretching and a lot of meditation and breathing. Once you realize it makes you feel better, you just get in the routine.”

A benefit of the pandemic is the extra time with his wife and his son and daughter-in-law, whose baby is nearly 2 now. “I’m not a huge fan of all the travel that sometimes work brings,” he says. “Our granddaughter only lives about five minutes away, so I get to see her several times a week and spend time with her, which is great.”—JILL TYRER

Chef Symon’s Holiday Cooking Advice

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

Plan ahead and start preparing your holiday meal a week in advance. “There are a lot of things you can do five days in advance so you’re not on your feet 10, 12 straight hours or whatever trying to get it all done the day before and the day of,” he says.

Consider what you can make ahead and freeze, like casseroles, he suggests, so you’ll just have to warm them up before serving. “Get vegetables cut, make your stock, do the kinds of things you can do in advance,” he says.

If you’re super stressed, that doesn’t help things,” he says. “Really, at the end of the day, one thing COVID’s taught me is to enjoy your family, so the last thing you want on a holiday is to be stressed out and achy and in pain and not enjoy the people around you.”

Check out these holiday-appropriate dishes Symon and his culinary director recommend from Fix It With FoodSlow-Roasted Salmon, Loaded Greens With Walnuts and Mushrooms , and Pumpkin Pie .

#LiveYes & Fight for Better Access to Care

By Sarah Cloud

It’s tough to fight an unseen battle from an uneven playing field. My son was diagnosed 11 years ago with juvenile idiopathic arthritis (JIA), my husband four years ago with ankylosing spondylitis (AS), and myself a few years ago with rheumatoid arthritis (RA). We are active every day in changing the platform for families like ours to gain knowledge on how to access and receive care in non-urban areas.

In 2018, I decided to enroll in college. That was a massive step for this JIA mom and wife. I need to know how to fight for my family in a world that is very complicated medically. I have learned, through the years of my involvement with the Arthritis Foundation, just how lacking my access to care was. What I didn’t know until I started studying for a degree, in patient navigation and healthcare management, was how large the gap was in my health literacy. If I — a mom of a fantastic young adult with arthritis, and as the wife of a spouse with ankylosing spondylitis, and as an RA patient myself — was lacking health literacy, how would that look for the families I am trying to serve and empower?

What I learned through gaining these two degrees were a few key lessons.

  1. As the mom of a juvenile arthritis (JA) warrior, I knew more than some of my teachers. When teaching how to access drug therapies and service programs, my teachers had never thought of the strategies I learned from other JA moms. Never underestimate the collective brainpower of the JA Mom Tribe. If it can be done, they will find a way.
  2. When it comes to the complexities of insurance regulations, care plans, federal regulations and such, you really should get a degree for what we do every day to access our care. However, I also learned the right way to navigate the system and how to do that effectively and to speed things up when needed.
  3. The biggest key takeaway from this learning experience is that we can’t fight for what we don’t know. We need to educate ourselves and our peers on what it means to live life to the fullest with arthritis. We need to educate our communities on how to access care so we can live our best life.

If you have had experience in access to care that might help us educate others, please reach out and share your story with the Arthritis Foundation. I so often hear from others that their voice is not as powerful because they feel their collective experience isn’t as difficult. It’s still the voice of our collective experience. I want to hear from every family about how they fight access barriers. Is it a lack of infrastructure, lack of providers, a lack of resources for your community? What is your barrier to care, and what can we — as moms, wives, sisters, dads, brothers and fellow warriors — do to lift the voices of those who need help? How can we take power and change the conversation?

Join me and my family in the fight and take action to be an advocate for all of us with arthritis.

Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’s RX for Access. This resource can help you understand how to choose the right coverage for your arthritis care needs and help you navigate paying for care and managing insurance claims.


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COVID-19: What Do We Know Now?

By Julie Eller, co-host of the Live Yes! With Arthritis Podcast 

In the past three months, people in our country and across the world have experienced so much change. We have worked together by staying isolated at home. We have supported our health care workers by forgoing elective medical procedures, sewing protective masks and even joining those rounds of applause we have heard in the streets. We have come together to stand as a united community, vocally advocating for those at high risk, like the immunocompromised, elderly and people of color who are disproportionately impacted by medical crises like this pandemicImportantly, we have taken these three months to learn as much as we can about the novel coronavirus. On this week’s episode of the Live Yes! With Arthritis Podcast, co-host Rebecca Gillett and I interview Dr. Kevin Winthrop, and together we get answers to some of the top questions we know have been on your minds. Listen now. 

Continue reading COVID-19: What Do We Know Now?

Gerica’s Tips for the “New” Normal

By now, those of you reading this are likely experiencing a shelter-in-place order, school cancellations, or other social distancing situations in your own communities due to the COVID-19 global pandemic.  Here in California, our state is under a statewide shelter-in-place directive and I am on week 2 of 4 with my children’s schools transitioning to “distance learning”.  Some districts in our area have already announced this will continue for the remainder of the school year.  If you are anything like me, this sudden and massive change has rocked your family unit and you are trying to navigate the unfamiliar.

Continue reading Gerica’s Tips for the “New” Normal

Wait, Kids Get Arthritis?

“Kids don’t get arthritis.”

 That’s the first thing Chrissy and Jason Rose said when the doctor told them their 13-month-old son had juvenile arthritis.

“As an infant, Carson was a cranky baby,” Chrissy explains. “He would scream and cry and didn’t sleep through the night until he was more than a year old. He would lay on the floor and pull at his legs. We didn’t know what was going on and were kind of going crazy. Continue reading Wait, Kids Get Arthritis?