Whether you’ve been recently diagnosed with ankylosing spondylitis or have been living with it for some time, you know that this condition can feel isolating. Ankylosing spondylitis isn’t well-known, and many people don’t understand it.
But you’re not alone. Support from others who understand your condition is key to leading a happier, healthier life.
Here are nine resources for support that you can look up right now.
The Spondylitis Association of America (SAA) is a nonprofit organization dedicated to research and advocacy for all types of spondylitis, including ankylosing spondylitis.
You might consider getting involved with them in person. Or, you can take advantage of their online message boards to connect with others from across the country. You can post questions and offer your own insights all from the comfort of your home. There are conversations on topics including lifestyle challenges, medications, therapy options, and more.
The Arthritis Foundation, a leading nonprofit in arthritis research and advocacy, has its own set of networking opportunities for people with all different types of arthritis.
This includes the foundation’s Live Yes! Arthritis Network. It’s an online forum that offers opportunities for people to connect about their journeys and support each other. You can sign up and connect online to share experiences, photos, and treatment tips.
If you prefer to work off your own social media pages, the good news is that the Arthritis Foundation has its own Facebook and Twitter accounts. These are good resources for keeping up with new research about arthritis and ankylosing spondylitis. Plus, they provide opportunities to connect with others.
You can also make your voice heard on social media by sharing little-known details about ankylosing spondylitis.
We often seek inspiration from others, which is perhaps why the SAA has made it a point to create a blog with real-life experiences.
Called Your Stories, the blog offers a space for people with spondylitis to share their own struggles and triumphs. Aside from reading others’ experiences, you might even consider sharing your own story to keep the conversation going.
The SAA has yet another opportunity to help you stay informed and supported.
“This AS Life Live!” is an interactive online talk show that broadcasts live. It’s hosted by Imagine Dragons singer Dan Reynolds, who has ankylosing spondylitis. By tuning in and sharing these broadcasts, you’ll find empathetic support while raising awareness.
The SAA also has affiliate support groups across the country. These support groups are run by leaders who help facilitate discussions about spondylitis. Sometimes, they bring in guest speakers who are experts on ankylosing spondylitis.
As of 2019, there are nearly 40 support groups across the United States. If you don’t see a support group in your area, contact the SAA for tips on starting one.
Despite advances in treatment, there’s still no cure for ankylosing spondylitis, and doctors aren’t sure of the exact cause. Ongoing research is needed to help answer these critical questions.
This is where clinical trials come into play. A clinical trial allows you the opportunity to take part in research for new treatment measures. You may even receive compensation.
You can search for clinical trials related to ankylosing spondylitis at clinicaltrials.gov.
Ask your doctor if a clinical trial may be suitable for you. You’ll get to meet with ankylosing spondylitis researchers. Plus, you have the potential opportunity to meet others with your condition along the way.
We often think of our doctors as professionals who only offer medications and therapy referrals. But they can recommend support groups, too. This is especially helpful if you’re having difficulty finding in-person support in your area.
Ask your doctor and their office staff for recommendations at your next appointment. They understand that treatment includes managing your emotional well-being just as much as any medication you’re taking.
One of the complex mysteries about ankylosing spondylitis is that it can have an inherited genetic component. The condition may not necessarily run in your family, though.
If you’re the only one in your family with ankylosing spondylitis, you might feel lonely in your experiences with your symptoms and treatment. But your family and friends can be key support groups.
Maintain open communication with your family and friends. You can even set up a specific time each week for check-ins. Your loved ones may not know what it’s like living with ankylosing spondylitis. But they’ll want to do everything they can to support you through your journey.
As isolating as ankylosing spondylitis can feel, you’re never alone. Within minutes, you can connect with someone online who shares some of the same experiences you do. Reaching out and talking to others can help you understand and manage your condition and enjoy a better quality of life.