All posts by Arthritis Foundation

Live Yes! INSIGHTS LIVE in New York

Huge arthritis study draws experts to begin tackling real issues

This week, nearly 200 people — including health care providers, policymakers, leaders of a variety of industries (including health services) and representatives of the arthritis community — came together in New York City to discuss ways to address key issues surfaced in the Arthritis Foundation’s Live Yes! INSIGHTS study. Continue reading Live Yes! INSIGHTS LIVE in New York

Live Yes! With Arthritis Podcast: Episode 6 – Reframing Pain

Just how does our body process the pain we feel? It’s just as complex as explaining the pain we each feel. Those of us living with arthritis know the realities of pain can be debilitating, defeating and overwhelming. It’s almost always there when you live with arthritis. Sometimes we can forget it’s there for a little bit and ignore it to a degree, but mostly it’s ever-present. How do you escape the pain? How do you cope? It’s exhausting, isn’t it? I get it. Sometimes it feels like a tune that keeps playing in your head on a never-ending repeat loop. You’re tired of talking about it and you feel like those around you are tired of hearing about it, or maybe they don’t even believe you.

Continue reading Live Yes! With Arthritis Podcast: Episode 6 – Reframing Pain

The Coronavirus: What People With Arthritis Need to Know

See the Arthritis Foundation’s special report on the coronavirus, updated March 6, 2020.

This article was posted Feb. 28, 2020. Please see our special report and updated information on the coronavirus.

If you have arthritis, you may be anxious about the coronavirus. It’s important not to panic. According to the CDC, the number of people infected with COVID-19 (short for “coronavirus disease 2019”) in the U.S. is relatively low but growing rapidly. The agency is working with state public health officials to implement aggressive measures to slow and contain transmission of the virus. Continue reading The Coronavirus: What People With Arthritis Need to Know

Tackling Relationships and Arthritis

Tackling Relationships & Arthritis – Live Yes! With Arthritis Podcast

We all know relationships can be a challenge — a challenge that’s made especially difficult when you are living with chronic illness. Talking about arthritis with those around us is incredibly intimidating. Will my boss believe me? Are my friends going to judge me? Am I a burden on my partner? Continue reading Tackling Relationships & Arthritis – Live Yes! With Arthritis Podcast

Ana_Villafane arthritis

For Ana Villafañe, the Stage is a Passion, a Career – and Arthritis Therapy

On NBC’s TV drama New Amsterdam, Dr. Valentina Castro diagnoses a patient with lupus, an autoimmune disease that causes chronic pain and fatigue. After the cameras stop rolling, Ana Villafañe, who plays Dr. Castro, becomes teary-eyed; the scene cuts close to home, reminding Ana of her own juvenile arthritis diagnosis at the age of 7.

As a child, Ana often felt like an out­sider, fighting an invisible illness her peers didn’t understand. But when she was 9, she found her happy place and her calling – singing in talent shows at the Arthritis Foundation’s Camp Funrise in Miami, Florida.

“When I’m performing on stage, I go into a different realm,” she says. “It’s not just a distraction from my arthritis, it also serves as a form of self-healing.”

A Star on the Rise

 

Performing quickly became her passion. She majored in music in college and landed her first professional acting role at age 19 in the movie Dostana. Other TV and movie roles quickly followed, including the female lead in the superhero movie Max Steel.

She made her Broadway debut in 2014 in On Your Feet!, a musical about Emilio and Gloria Estefan – who handpicked Ana to play her. “When performing on Broadway, I would spend two to six hours a day dancing. Doing what I love for work adds to my fuel,” Ana says.

Now 30, Ana co-stars not only in New Amsterdam, a medical drama, but also as New York City Councilwoman Diana Barea in the NBC sitcom Sunnyside.

Active Self-Care

Despite her busy schedule, Ana starts each day with a morning trip to the gym for strength training. Dance and yoga are also part of her regular routine.

“My right hip is my most degenerated joint and sometimes I have to modify yoga poses due to my arthritis. I’ve been very upfront about acknowledging my limitations with my yoga instructor,” Ana says. “I have a love/hate relationship with yoga,” she adds with a laugh. But certain poses “help to straighten my posture while also improving my flexibility and reducing joint pain.”

While medications help control her RA, she knows a healthy lifestyle is key.

“There are days that can be very frustrating because of pain and stiffness or a flare, but my goal is to work to feel good in my body every day and manage my arthritis in a way that goes beyond taking medication,” Ana says. “Having arthritis forces me to take care of myself.”

Plus, she adds, “Maintaining this level of discipline also helps me stay focused in my career.”

Growing Up With JA

As a child, Ana struggled emotionally as well as physically with arthritis. “Having an invisible illness can be hard,” she says. “People see you as strong even though you may be in pain or have certain limitations. I used to come from a place of fear and kept that part of me hidden.”

Now she owns her RA. When she is on set, standing for hours at a time, she doesn’t hesitate to get comfortable shoes or do stretches to ease her hip pain.

“When I was younger, I would just grin and bear any discomfort, but as I’ve gotten older, I’ve realized everyone has limitations and boundaries, and I’m very open about having arthritis,” Ana says.

She has a lot of young fans with arthritis who follow her on social media, and Ana tries to respond to all of their questions.

“I remember how hard it was to be a child in the hospital for several months or to feel isolated in school because no one wants to sit with you at lunchtime,” Ana says. “I want to let kids know their arthritis doesn’t need to define them, and to encourage them to discover their own passions in life.”

Ana’s Tips for Arthritis Pain Relief

In addition to medications, Ana found these techniques ease her arthritis. “It’s a process of trial and error and finding out what works best for you,” she says.

Acupuncture – While performing on Broadway, Ana started getting weekly treatments, which have been “incredibly helpful” in relieving pain and stiffness.

Bubble baths and Epsom salts – “Sometimes, it can be difficult to find a comfortable sleeping position, so immersing myself in warm water [before bedtime] can help,” she says.

Diet modifications – Ana has eliminated gluten, coffee and sugar from her diet. “It’s a constant process of working to see if certain foods might aggravate or alleviate pain and inflammation,” she says.

Travel tips – An ergonomic travel pillow keeps her shoulders back and helps Ana sleep better during long flights. She also walks around the cabin and stretches at the back of the plane.

Author: Linda Childers

Your voice counts too! In just ten minutes you can participate in our Live Yes! Insights assessment which empowers you to share your experience and show decision-makers the realities of living with arthritis. This ongoing, scientific study utilizes a series of validated assessments to shine a light on the realities of arthritis. For better treatments, better policies and better services in your own backyard.

arthritis a mandate for action

A Mandate for Action: New Arthritis Data Shows Gaps That Demand Action

Pain. Sleeplessness. Anxiety. Depression. Not getting your medical needs met.

Those are among the top things people with arthritis say they struggle with most. And the magnitude of those issues comes through loud and clear in “A Mandate for Action” — a new report spearheaded by the Arthritis Foundation that captures input from 18,000 responses to the ongoing Live Yes! INSIGHTS assessment.

This continuous scientific study, which is patient-centered and patient-driven, is one of the nation’s largest studies of its kind. The results amplify the patient voice to influence — and change — the future of arthritis.

For the first time, patient input brings real-life data to the forefront, validating the individual experiences arthritis patients have shared anecdotally for years. Your stories have always reflected the issues you face; but the data being captured now underscores the real extent of those challenges in a way never done before.

“I think the results are what those living with arthritis knew,” according to comedian and Arthritis Foundation partner, Matt Iseman.

As this report shows, arthritis is a serious public health crisis, affecting at least 54 million Americans. And the toll of living with this complex disease, in its many forms, is astronomical.

arthritis

Ever-present arthritis pain leads to other problems. There’s constant fatigue and sleep disruption. 92% said pain interfered with their day-to-day activities. Two-thirds said it’s difficult to take part in family activities — and felt depressed and/or fearful and anxious.

arthritis depression

In addition, arthritis patients have difficulty doing their job.

arthritis work

arthritis work

Getting the health care you need as an arthritis patient is another major obstacle. Less than half of respondents to INSIGHTS were satisfied with their health care experience or felt they got the help they needed, especially among those with lower incomes.

arthritis finances

Clearly, despite advances in medicine, arthritis patients suffer from intense pain, are unable to engage in daily activities and don’t get what they need from our health care system. These ongoing findings are being shared with health care professionals, policymakers, corporations and other decision-makers — with our urgent mandate for action.

The findings aren’t surprising, but they are eye opening. As the CEO of a major medical device company that develops and markets treatments for arthritis has observed: “I thought I understood the impact that arthritis has on the lives of so many people. I did not. The impact of the data here cannot be underestimated,” shared Tony Bihl, CEO of Bioventus.

Besides validating the Arthritis Foundation’s work over the past seven decades, the data further supports our current initiatives and will guide us in the future — driving our national agenda while shaping improvements in the services provided in local communities.

“These are data a lot of us have experienced firsthand, but now we know we’re not alone. We know how many fellow Americans are facing these same challenges,” says Iseman.

Patients in all 50 states have weighed in, and no community is immune from the effects of arthritis, though the challenges vary widely from one community to another. Lower-income patients and minorities suffer most. As data collection continues, these rapidly growing facts and figures will gauge changes in communities nationwide, so we can drill down more deeply on the support needed locally — and find solutions.

“The pain, hardship, isolation and marginalization of people with arthritis can no longer be ignored,” says Ann M. Palmer, Arthritis Foundation president and CEO. “This report allows us to share with local and national leaders the true impact of living with arthritis. Arthritis patients are living a life of less, instead of living the life they deserve.”

Your voice counts. What you add is imperative to changing the future of arthritis. Participate now — it takes only 10 minutes. Continue to report what you’re going through, to help measure gaps and the progress being made. In the words of Matt Iseman, “It’s a time for us to take action, to make a difference.”

relationships with arthritis

Real Talk About Love & Relationships With Arthritis

Happy Valentine’s Day! It’s time for real talk about the ways that people with arthritis deal with relationships, love and intimacy as they manage their disease.

On Tuesday, Feb 11, The Arthritis Foundation’s Rebecca Gillet (co-host of the Live Yes! With Arthritis podcast) hosted a Facebook Live! event with Meg Maley, a reality TV star from CBS’s Big Brother; actor Clark Middleton, who has a recurring role on NBC’s The Blacklist; Mariah Leach, the founder of Mamas Facing Forward; and Jed Finley, the founder of Living with Ankylosing Spondylitis. They had a frank discussion about their experiences related to love, sex, and relationships.

You can watch the entire inspirational Facebook Live event by clicking here. Here are the key takeaways:

Question #1 – Dating can be difficult under the best circumstances; how does arthritis change the dating dynamic?

You have to be confident in yourself. Swollen joints or patches of psoriasis can make you feel embarrassed, but it’s better to be upfront and open with your loved one. Don’t be afraid to explain your arthritis to your significant other, because it’s better to be your true self — and that includes how arthritis affects you. Honestly, the more you hide it, the more pronounced it will look to other people. When you wear it as part of who you are, it kind of goes away—people don’t pay a ton of attention to it. It doesn’t have to be an obstacle; you can treat it as an asset. Share your diagnosis and be willing to answer any questions they have.

Question #2 – When and how do you tell someone you’re dating that you have arthritis?

It’s a big part of your life, so make sure you’re comfortable sharing this with other people. It’s worth it to share this part of your life with them because it’s much easier. People are quick to see past it if you own it.

Question #3 – What mistakes have you made in relationships relative to your arthritis?

Believing in “mind over matter”. In reality, this just forces you to do too much and exacerbate issues by trying to over-correct and make up for, or cover up, your arthritis pain. The need to “show your worth” or “show your value” in a relationship can be harmful to your physical health. On the flipside, you can also lack compassion for your partner if they’re sick or in pain. It’s easy to feel like other people shouldn’t complain when you’re dealing with much worse than them on a daily basis.

Question #4 – Has arthritis revealed anything unexpected in your relationships?

You could discover that your partner is the best medical partner ever — someone who can easily remember important information and act as a sounding board. It’s great to have someone who isn’t squeamish with the tasks you might have to do regularly — like doing an injection to deal with pain.
Your diagnosis might help you prepare to be parents, like how to deal with things you have zero control over. Talking about when things are terrible and you’re exhausted. Building teamwork by going through the typical hurdles first-time parents go through.

Question #5 – Arthritis doesn’t always keep your timetable; how do you deal with unexpected flares?

You have to manage your time well and accept your limitations. Then make sure both you and your partner understand those limitations. Don’t feel bad about not being able to do everything. Remember you don’t always have to do everything together. Adjust your schedule so you know the downtime you need after doing activities, if you already work it into your plans, it won’t seem out of place.

Remember when you’re traveling that you don’t have to see everything; you can find one amazing place and hang out there. Don’t feel like you have to keep up with your partner.

Tip: Say “thank you” statements instead of “I’m sorry…”
— i.e., “Thank you for understanding” instead of “I’m sorry I can’t do this.”

Question #6 – What is the best advice you could give or have received about dealing with arthritis in a relationship?

• Own your own role in having arthritis as a piece of yourself.
• If your partner thinks of arthritis as something you face together, it can relieve the guilt you can feel about the stress and challenges arthritis places on your relationship. Having a united front can bring you closer together.
• If you consider arthritis your issue you have to deal with physically, it can be a lot to bear. But if it’s something you’re both willing to work on together, and laugh and be creative about, then it becomes something doable you can face together.
• Freedom is in the minutiae. You don’t have to do everything; the freedom is in the tiniest things. Find the great things you can do in the small area of what you can do rather than focusing solely on your limitations. If you try to operate outside of your limitations to please someone, it’s not going to be a good experience for you.

Question #7 – How do you deal with intimacy in relationships with arthritis?

There’s always the fear of not knowing if you’ll be able to get into this, if you’ll be hurting after or if it will affect the plans you have in the near future. Arthritis can make a lot unknown regarding your physical health, making it difficult to “get in the mood” and stay there.

Treat intimacy as an opportunity to get creative and explore different options like assistive devices, fun toys, propping up with pillows, etc. Improvise and have a sense of humor about it.

Take your pain meds in advanced or take a warm shower so you feel more relaxed and less in pain.

It’s important to accept yourself and feel comfortable in your body despite weight gain from medication, rough skin from psoriasis or swollen joints. Your self-esteem contributes to your intimacy. The challenge with any disease is your sexuality can feel connected to your humanity, so embracing however we find ourselves sexy can feel powerful.

You have a right to sexual health. If you’re really struggling with your libido, talk to your doctor about it. Your medications can affect your health, or there could be other factors in play that could be detrimental to your sexual health.

Question #8 – How do you respond to invitations ahead of time?

Don’t plan your life thinking you won’t feel good. Don’t be afraid to say yes, but also don’t overcommit yourself. If it’s something you want to go it, commit to it and plan for it. If it’s an activity you believe you might struggle with (like walking around for a long time) suggest an alternate or similar activity. If you accept and then have to decline, practice the “Thank you for….” statements instead of apologizing.
You don’t have to be your 100% self to go and do something. Your family and friends will accept you if you’re not at your best; they just love your presence. Make sure to take breaks during social functions when you need to, if possible.

Question #9 – Anything else? Any final advice?

Communication is key, so don’t hide anything. Being open and honest at all times is always best. Be willing to laugh at the situation, with a partner who will laugh with you.
Language matters. Being upfront is important, but the language you choose creates a better life and makes you feel better. The way we frame our thoughts and language controls our inner dialogue and how we see ourselves. Instead of “struggling” with arthritis, see arthritis as something that challenges you. Be aware of the language you use when talking about your disease, to frame your own mindset.

There’s someone out there who will be willing to support you, go to doctor’s appointments with you and fight this disease with you. Love is out there and having arthritis won’t prevent you from finding the right person.

Libido issues, or discrepancies in division of labor at home, can be difficult conversations to have with a longtime partner. But it’s important to know you don’t have to find the solution to tough problems in one conversation. Keep having the conversations. Strong relationships find a way to solve these types of hard problems.

The dating scene isn’t easy, and arthritis doesn’t help, but our tips on dating with arthritis can help you feel confident and ready to mingle.

arthritis news roundup

February Arthritis News Roundup

We consistently learn more about identifying the symptoms of arthritis and how it affects people’s day-to-day lives. Here are a few inspiring developments in the world of arthritis over the past month.

FDA Issues Warnings Related to Arthritis Community

The FDA has issued a warning regarding gabapentin and pregabalin, stating they are associated with breathing problems when used with central nervous system depressants or in patients with lung problems. This warning also includes drugs fibromyalgia patients may be taking. Talk to your doctor if this warning may apply to you.

Learn more about the drugs used to treat fibromyalgia in the arthritis drug guide.

6 Tip-offs to Rip-offs: Don’t Fall for Health Fraud Scams

The FDA issues a buyer-beware warning on supplements to help you avoid health fraud scams, including claims from some supplements for weight loss or treating arthritis. Read their tips to avoid wasting your money and what to look out for.

The FDA also noted 50% of dietary supplement manufacturers do not have documented quality control on their products, citing continued violations of “basic” manufacturing requirements.

Shop smart when looking to buy any type of dietary supplement. You can find tips on how to warning regarding gabapentin and pregabalin. If you’re considering CBD supplements, be sure to check the Arthritis Foundation CBD Guidance for Adults With Arthritis before you buy.

High-Dose Flu Shot Best for Rheumatoid Arthritis

According to researchers writing in The Lancet Rheumatology, a high-dose version of the influenza vaccine is safer and more effective than the regular flu shot for patients with rheumatoid arthritis.

Both older people and RA patients experience reduced responses to flu shots because of chronic inflammation and use of multiple prescription medications, in addition to the difficulties that arise from patients dealing with multiple diseases at once. Because of this similarity, the study sought to find out if RA patients would see benefits from high-dose flu shots in the same way older patients do.

Although this is the first study of its kind, its results show promise for both RA patients and future studies. You can also read about why flu vaccines are especially important for children with JA.

Ideal Management of RA in Pregnancy Improves Outcomes

Pregnancy can already be difficult, and rheumatoid arthritis doesn’t make it any easier. But new research shows that women whose rheumatoid arthritis is carefully managed before and during pregnancy have a significantly lower risk of adverse pregnancy outcomes, including miscarriage or perinatal death.

First author Alessandra Bortoluzzi, MD, PhD, from the rheumatology unit at the University of Ferrara (Italy) and co-authors looked at seven diagnostic, therapeutic and follow-up health care quality indicators during the pre-pregnancy and perinatal period. Overall, women with RA had a significantly higher rate of thyroid diseases, adverse pregnancy outcomes and miscarriage or perinatal death when compared with controls. However, those who followed the ideal clinical pathway during pregnancy had a 40% lower odds of adverse pregnancy outcomes.

Preparing for pregnancy while you have arthritis isn’t easy, but these tips can help!

CDC Update: Adult Physical Inactivity Map of the U.S.

Research strongly supports physical activity playing a huge role in treating arthritis. How does your state stack up? Do you live in a place that’s rated more physically inactive than others? The Centers for Disease Control and Prevention just released an adult physical inactivity prevalence map, which shows inactivity levels vary among adults by location, race and ethnicity. Find out where your state ranks.

Staying physically active with arthritis is often very challenging, especially when you’re in pain. Here are tips to get you started with physical activity. You can also check out a recent blog on physical activity or tune in to the Live Yes! With Arthritis podcast’s latest episode on arthritis and physical activity to learn about the benefits and how to take the first step.

CDC Releases Updated Statistics on Arthritis, Mental Distress and Depression

Chronic pain from arthritis is associated with anxiety and depression in many people. The Centers for Disease Control and Prevention released state-specific prevalence data last month showing a higher incidence of frequent mental distress in the Appalachian and southern states. The CDC says all adults with arthritis will benefit from systematic mental health screenings by their health care team.

Arthritis can make everyday life difficult for the millions of Americans struggling with its many forms. Learn when to seek treatment and care options available for anxiety and depression in arthritis. Get the resources you need and get connected with others like you by joining the Live Yes! Arthritis Network.

JA Conference Registration

JA Conference Registration and Travel Awards Are Now Open!

Register early and save! Year after year, the Arthritis Foundation’s National Juvenile Arthritis Conference has brought kids with rheumatic diseases and their families together for a weekend full of education, inspiration and connection with others on a similar journey. Join us this summer as two conferences become one epic event. Whether you are new to the JA Conference or returning, we invite you to join us in Orlando at JA Conference 2020.

For many families, it may not be feasible to plan for a weekend conference that might include extensive travel. To help with these travel costs, the Arthritis Foundation is pleased to offer limited financial assistance to families wishing to attend the JA Conference who meet certain criteria. The 2020 JA Conference Travel Awards applications are open to children/teens and their families (up to 4 people), and young adults (ages 18 – 30).

Click here to learn more about the JA Conference Travel Award Program.

2020 JA Conference Travel Awards applications close on February 28.

FAQs:

  1. How long does it take to complete a Travel Awards application?

The form is relatively quick and painless, but we’d recommend setting aside about  20 minutes to complete it. All information is relevant to the application and review process, and we want to make sure we are getting complete information.

  1. Are Travel Awards solely based on fundraising activities?

No! While we do ask about any fundraising you and your family may have done throughout the year, this is not the sole criteria for receiving a Travel Award. Applicants are scored by an independent committee on various levels of engagement with the Arthritis Foundation – whether you’re an Advocate, Platinum Ambassador, committee volunteer or participate in local events.

Testimonials from some of our recent attendees and Travel Award recipients:

“We were so thrilled to be able to take part in this year’s Seattle conference. Had it not been for our scholarship, we would never have been able to afford the trip. We made new friends, understand Lana’s disease—and potential treatments/coping strategies—better, and were blessed to have had Lana participate in a group project/experience that we believe she will remember for the rest of her life. Our son has more compassion and understanding for his sister now, too. Thank you for making such a positive impact on our lives.”

“On behalf of our family, I would like to say thank you from the bottom of our hearts for providing us with a travel award to come to the Juvenile Arthritis Conference this year in D.C.  My daughter was diagnosed with oligoarticular JIA five years ago.  We had heard about how wonderful the JA Conference was but had never been able to work out our schedule to attend until this year. We knew that it would going to be an amazing experience for our family, but we had no idea how life-changing it would be. Being parents of a child with JIA can be very isolating, especially when you only know a handful of other families like you. I can’t put into words how it felt to be in a room full of hundreds of people who understand our story and have lived through what we live through. We truly felt for the first time that we were not alone.”

“A small light is turned on into your darkness when you connect with the Arthritis Foundation. Opportunities are presented to you for learning, connecting and managing this new road. Your light becomes a little brighter with each new opportunity. One day you learn about the national conference and your now 11-year-old gets overwhelmingly excited about the idea of attending. You want to be excited too, yet you understand you just can’t afford to go at this time. You decide to take a chance and apply for the travel awards and you say a little prayer as you send it off in hopes that somehow, someway, it will happen for your daughter. Then one day an email arrives, and you learn that your family was chosen to attend, and tears of joy flow freely in your home when you see the light in your daughter’s eyes. Conference was simply amazing.”

“We received travel awards the first few years and was the primary reason for us going to our first conference back in 2011. It was just me and the boys. From the moment of registration and the opening evening, I knew the JA Conference was going to be life-changing. We went home and told [my husband] we were going the next year so he could experience what we had. It proved so beneficial for him the next year because he was still somewhat in denial of [our son’s] JA. The information we’ve received has been so helpful, but the connections we’ve all made have been life-changing. We have a HUGE JA family now. I’m so thankful for that first scholarship and what it’s done for our family.”

The 2020 JA Conference will take place on July 23-26, 2020, in Orlando, Florida, at the Renaissance Orlando at Sea World. Early-bird Conference Registration is already open if you are not applying for a Travel Award.

For the latest news and updates, be sure to check the JA Conference website and follow along on our Facebook page!

If you have additional questions about JA Conference Travel Awards, please contact Katie Bitner at kbitner@arthritis.org or 470-588-0710.