On Tuesday, October 12, many voices will be heard on World Arthritis Day (WAD) — a day designed to raise global awareness about arthritis. Through activities around the world, organizations and patient advocates will promote awareness of the symptoms connected to arthritis and highlight the importance of early diagnosis to gain access to the proper medical treatment as soon as possible.
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On World Arthritis Day (WAD), the European League Against Rheumatism (EULAR) will be drawing attention to their Don’t Delay, Connect Today campaign, which began in 2017. The campaign also spreads the message of the importance of early diagnosis and aims to increase access to care for all living with rheumatic and musculoskeletal diseases.
To spread the word about World Arthritis Day on social media, use the hashtag #CUREARTHRITISWAD.
Simon R. Stones, a patient advocate based in Bolton, England, and a member of Emeunet, a working group of EULAR, will be actively involved in helping raise awareness and creating a greater feeling of connection with people living with arthritis.
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Having been diagnosed with juvenile idiopathic arthritis (JIA) at age 3, Stones says that he was unable to even have a conversation with another young person about arthritis until he was almost a young adult.
“When I was diagnosed, I never had the chance to meet another young person with arthritis,” Stones says. “Clinics were held in the outpatient’s department at the hospital, so even then it was impossible to know which other children had arthritis. I never had access to peer support and didn’t actually engage in a conversation with another young person with arthritis until I was 17,” he says.
According to Stones, who is now 27, general awareness in the media was at a similar level, with most people associating arthritis with old age. “That’s still the case today, unfortunately,” he says, “but attitudes are slowly changing. More people are being open about their diagnosis, and consequently, the message is finally getting out there that arthritis can affect anyone — and that there are many different types of arthritis.”
How — and Why — This Advocate Celebrates World Arthritis Day
Stones’s?personal experience is one of the many reasons why he welcomes the opportunities that World Arthritis Day creates both for advocates and for patients.
“These days are opportunities where people can unite in solidarity to show the world that they are living with a condition like arthritis,” he says. “Such days are quite powerful. They can demonstrate to others how they aren’t alone with their condition, and that there is life after a diagnosis. World Arthritis Day is no exception — as we see campaign videos appearing, people talking, politicians starting to listen, and momentum towards achieving something greater. It also helps when multiple people and organizations get behind such awareness days, as weight in numbers can certainly add to the eminence of such campaigns.”
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Redefining Arthritis and Its Many Forms
For Stacy Courtnay, an Atlanta-based patient advocate who works closely with the Arthritis Foundation, a day like World Arthritis Day can also reach many people who aren’t familiar with arthritis and help redefine what the disease could mean to a person beyond most people’s stereotypical definition.
“Most people don’t realize that there are over 100 different kinds of arthritis,” Courtnay says. “The misconception is that when you hear ‘arthritis,’ you think of osteoarthritis, which is an old person’s disease. The reality is that there are a lot of different types of arthritis which are autoimmune diseases that affect your body in so many different ways — more than just your joints. Educating people about the different types of arthritis is important. It’s also important to spread the awareness that kids can get arthritis, too. Most people cannot wrap their head around that.
"At the Arthritis Foundation, we have a huge group of kids that we call JA kids or juvenile arthritis kids. It’s sad that they are dealing with the same type of pain as adults have to deal with. And there are all these types of scary medications that I’m terrified to take as a 40-year-old woman. I can’t imagine having to give some of these drugs to my child.”
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Courtnay, who was diagnosed with rheumatoid arthritis nearly 20 years ago, also believes that even the most experienced patient can benefit from additional awareness, even about their own disease.
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“Arthritis is often mistaken for something else,” she says. “It’s not what doctors look for first. People don’t realize that it can affect your organs, even your eyes. I starting having trouble with my eyes years ago. It was one of my first symptoms, but I didn’t even realize it was a symptom until recently. I wear contact lenses and I experienced a lot of inflammation in my eyes. With rheumatoid arthritis, your immune system attacks your joints as if they were foreign bodies. My eyes were attacking the contacts as if it were a foreign body, because it is. I was using steroid drops to manage the inflammation,” Courtnay explains.
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When her doctor told her that she had developed early onset cataracts, however, it was presented as good news. “Almost everyone gets cataracts,” she says. “Mine was from using steroids for so long. Most people get them when they are 60, and I got mine when I was almost 40. When they removed the cataracts, they were able to put in permanent lenses in my eyes. Now I can see twenty-twenty and I don’t have to wear glasses!”
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More Arthritis Awareness Days and Campaigns to Note
- May is Arthritis Awareness Month. It is supported by the Arthritis Foundation,?Osteoarthritis Action Alliance, and many other groups.
- Juvenile Arthritis Awareness month is held during July.
- Rheumatoid Arthritis Awareness Day?is held on February 2?each year.
- Rheumatoid Arthritis Awareness Week (RAAW), is sponsored by the?National Rheumatoid Arthritis Society in the United Kingdom. It was held in June for several years, yet the observation moved to the month of September this year: RAAW 2021 is September 13 to September 18.
- Rheumatic Disease Awareness Month (RDAM) is held in September in the United States.
- World Autoimmune and AutoInflammatory Arthritis Day, or AiArthritis Day, is held annually on May 20. It is sponsored by the International Foundation for Autoimmune and AutoInflammatory Arthritis.
- Still's Disease Awareness Day on September 7.
- Invisible Disabilities Awareness Week, hosted by the the Invisible Disabilities Association (IDA)? is held in October.