Feeling like you're fighting Ankylosing Spondylitis (AS) alone? Here's help!

Ankylosing Spondylitis, as we call it in medical terms, may be a bit complicated for you. Simply put, it is a specific type of arthritis that affects the spine and its associated joints. When living with this long-term condition, sometimes you may feel like you are the only one experiencing this pain and discomfort. But you are not alone. There are many places and methods that can help you on this journey, provide you with the right information, and meet people who have had similar experiences to you. That is what we are talking about in this article today.

First of all, what is Ankylosing Spondylitis (AS)?

Before we get into this in depth, let's first understand what this condition is. Ankylosing Spondylitis (AS) is a type of inflammatory arthritis. "Inflammatory" means that it causes inflammation within the body. It mainly affects the joints in your spine .

Think about it, our spine is made up of small bones (vertebrae) stacked on top of each other. The joints between these bones help us bend, extend, and twist. In AS, the body’s immune system mistakenly attacks these healthy joints. As a result, these joints become swollen, painful, and stiff. Over time, this inflammation can cause new bone growths in the spine, fusing the vertebrae together, and even completely losing the ability to bend. This can start with stiffness in the spine when you first wake up in the morning, and over time, it can affect other joints, such as the hips and shoulders.

Where you can get support and information

When living with a situation like this, the strength that comes from the right information and emotional support is priceless. Let's take a look at some of the main places you can get help.

First of all, your doctor.

Your best friend and guide on this journey should be your treating doctor. No matter how much you learn from the internet and friends, only he or she knows exactly what your condition is, the appropriate treatments, new medications, and exercises you should do.

• Don't be afraid to ask the doctor any questions or doubts you may have.
• Before trying something you saw on the internet, talk to your doctor about it.
• If there is a change in your symptoms, if you experience new pain, tell him all about it.

What are Support Groups?

A support group is a place where other people with AS like you can come together. These can be organized at the hospital level or they can be online. In Sri Lanka, it is easier to find online groups.

What benefits do you get from a group like this?

• Don't feel lonely:The feeling of "I'm not the only one facing this" is a great source of strength.
• You can share experiences: You can also learn the little tricks that others use to manage pain and make daily tasks easier.
• A sense of relief: Talking to someone who understands your problems can be a great relief.

Think twice when searching for information online!

Nowadays, the Internet is an ocean of information. But in that ocean, there are pearls as well as garbage and even dangerous things. When looking for information about AS, you will often turn to blogs, online forums, and social media. You need to be very careful there.

Before trusting a website or online community, ask yourself these questions.

Trusted international websites and institutions

Although there are no large organizations dedicated to AS in Sri Lanka, there are several recognized institutions in the world that provide scientific information. Although the information in these is in English, it is very valuable.

• Spondylitis Association of America (SAA): This is the leading organization in the United States dedicated to AS and related conditions. Their website has a wealth of information about the disease, treatments, and exercises.
• Arthritis Foundation: This is a large organization that provides information about arthritis in general. It has a separate section on AS.
• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): This is a US government health agency. The information they provide is very reliable.

Let's also be aware of social media like Facebook and Reddit.

There are local and international groups dedicated to AS patients on social media platforms like Facebook. These are great places to share experiences and ask questions. However, the caution mentioned above is also very important here.

• Act on your gut feeling: If you see a group, page, or post that seems suspicious or fake, it probably is. Avoid such places.
• Don't confuse personal experience with medical advice: Just because someone says, "I took this medicine and felt better," doesn't mean it's right for you. It could even be dangerous for you. Always follow your doctor's advice for anything.
• Look for Verified Accounts: Facebook pages of large, reputable organizations have a blue check mark on them. This means that it is their official page. Information from such places is more reliable.

Living with AS is a challenge. But you don't have to face it alone. Getting the right information and support from the right people can make this journey much easier for you.