Activist Fights for Spondyloarthritis Awareness Month

Spondyloarthritis is an umbrella term for a number of immune-mediated diseases that cause inflammation in the back, spine, or pelvis (axial spondyloarthritis) or in joints or tendons outside the spine or sacroiliac joints (peripheral spondyloarthritis).

Axial spondyloarthritis includes ankylosing spondylitis and nonradiographic axial spondyloarthritis. Peripheral spondyloarthritis includes psoriatic arthritis, enteropathic arthritis, and reactive arthritis.

These inflammatory diseases affect 3.2 million Americans — more than are affected by rheumatoid arthritis, multiple sclerosis, and amyotrophic lateral sclerosis combined, according to the Spondylitis Association of America.

In 2013, former college athlete Charis Hill, 34, of Sacramento, California, was diagnosed with axial spondyloarthritis. After taking some time to adjust to the diagnosis, Hill has since become a prominent voice in the effort to raise money and awareness for this disease that, despite its prevalence, is relatively unknown.

Hill is currently working with Congresswoman Doris Matsui to introduce House Resolution 135, "Expressing support for the designation of May 2021 as 'Spondyloarthritis Awareness Month.'" As of this writing, the bill is still in committee, and Hill is working on getting more cosponsors.

Spondylitis Association of America CEO Cassie Shafer recognized Hill’s work on behalf of those living with spondyloarthritis, saying, “Charis is a long-time friend and member of our organization. We have worked with them for several years on various advocacy, support group leadership, and community outreach initiatives. We have always appreciated and applauded them for being a fighter and for their willingness to take a stand on the issues that impact the spondyloarthritis community. House Res. 135 would not be possible without Charis’s persistence, commitment, and staunch support for raising the visibility of the spondyloarthritis community.”

During a rare free moment, Hill discussed their achievements and goals as a disability and chronic disease advocate and activist.

EverydayHealth: Why is Spondyloarthritis Awareness Month so important to you?

Charis Hill: Making axial spondyloarthritis a household name is one of my life goals. Awareness is the key to funding, research, and creating policies that help with healthcare and education of medical students. Awareness builds more help for my whole community — my fellow “spondies.”

EH: How did you get started being an advocate and activist?

CH: When I was first diagnosed, I was reeling; it turned my world upside down. I started telling my story as a way to cope. I was seeking validation, but I ended up realizing that my story was connecting with a lot of people. I caught the attention of The Arthritis Foundation, who invited me to speak at events and then to go to Washington, DC, to do some advocacy.

Before I knew it, I was testifying in the California senate about healthcare. I fell into advocacy and just never stopped. I said yes to more and more opportunities until I realized that this is what my profession will be moving forward; my job is to be an advocate, even though I am not getting paid. I'm a professional patient. I'm professionally disabled, and I'm a professional advocate and activist.

EH: You were delayed in getting your diagnosis, even though your father also had spondyloarthritis, because it was considered something only men got.

CH: Many rheumatologists refuse to consider this diagnosis for women, especially Black women and other people of color, who often don’t test positive for a genetic marker — called HLA-B27 — that is common in white people with spondyloarthritis. But in fact, the gender divide is around fifty-fifty.

Both clinical and educational changes need to be made in medical schools. There isn’t a lot of focus on spondyloarthritis, or SpA, so this outdated information remains. The course curriculum needs to be expanded to include specific new research that points to the fact that this disease impacts women and Black people, that it is much more prevalent than most professionals think, and that they shouldn’t rely so much on the genetic markers.

EH: Where do you get the energy for all this advocacy while dealing with your own health issues?

CH: The thing is, I really don't have the energy to do it, but I’ve realized that I can't not do it. It started from the selfish place where I needed validation. Then I realized I was speaking for a whole community. Now I can't stop because I constantly get messages from people saying, “Thank you so much for being my voice. Now I don't feel as alone.”

The other reason is that I see that my activities and my advocacy are making real change in real time. I can see the fruits of my labor, and that's exciting. That means I'm changing the lives of other people that I will never meet.

EH: Why do you feel storytelling is so important?

CH: People respond emotionally to stories. It connects to the core of how we respond, resonate, and connect with people. They can’t tell you your experience is wrong.

People stay quiet because they are afraid of being stigmatized. Telling your own story allows other people to feel comfortable sharing their story with you, too. That’s a really deep way to connect with other people.

Telling people how this disease impacts you is the most powerful way to raise awareness — even more powerful than saying that 3.2 million people in the United States have spondyloarthritis. People will tune out as soon as you start spouting statistics.

EH: How do you recommend others with SpA (or the people who love them) similarly raise their public officials’ awareness for this specific resolution or the disease in general?

CH: For support of House Resolution 135, contact your members of Congress through email or a phone call to ask for cosponsorship and support. What's most important is telling your story, and making the direct ask. You also can reach out to the Spondylitis Association of America or go to its advocacy page. The more people who take part in their campaigns, the more the association is going to be able to accomplish for the whole community.

More Arthritis Awareness Days and Campaigns to Note

When spondyloarthritis gets its own awareness month, it will join a number of other arthritis types that have days, weeks, or months devoted to raising public awareness of them. These include:

Another annual event that serves to raise awareness of rheumatoid arthritis (RA) is designer Michael Kuluva's Tumbler and Tipsy fashion show, in which Hill has modeled. Kuluva’s clothes are comfortable and easy to put on, but also glamorous and colorful. Not surprisingly, the 2020 show, which was copresented by CreakyJoints, a patient-driven online community for people with all forms of arthritis, happened virtually.

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