I know that living with ankylosing spondylitis, or AS for short, can be challenging at times. Anyone who has suffered from it knows how difficult it can be to get through the day with the constant back and joint pain and morning stiffness. But you are not alone. There are many ways and resources that can help you, give you strength, and provide you with new information on this journey. That’s what we’re talking about today.
Why is this kind of support important to you?
Simply put, AS is a rare condition that can affect many aspects of your life. Because it is a chronic condition, it is important to take medication on time and learn to live with it. This is where support groups and trusted sources of information come in handy.
Imagine how comforting it would be to be able to talk to someone who understands the pain you're feeling and the problems you're facing. And how much easier it would make your life if you learned about the latest treatments and simple ways to manage your symptoms. That's why it's so important to be aware of resources like these.
Where can I find support and information?
There are several places that can help you and point you in the right direction. Some of these groups may meet face-to-face. Others may only operate online. You just have to choose the method that is most convenient for you.
| Where to get help | The support you receive |
|---|---|
| Your doctor. | The best person to ask about trusted support groups or resources that are appropriate for your condition. |
| The hospital or clinic where you are receiving treatment | Many hospitals have special support programs or awareness programs for patients. Check them out. |
| Community Health Centers | You can also get information about various health programs through centers like these in your area. |
| Medical faculties of universities | Sometimes we learn about patient-focused programs through research universities. |
Before choosing a group, do some research on what the group focuses on, how they meet (online or in person), and who leads the group.
Be careful about these things when going online!
Nowadays, you can find a lot of information on social media like Facebook and YouTube. You can read and watch the experiences of people living with AS, the things they do. These can be reassuring. However, this is a place where you need to be very careful .
Remember, don't take anything you find online, especially someone's personal experience, as medical advice. It's essential to talk to your doctor before trying anything.
When looking at information online, ask yourself these questions:
- Who runs this website or Facebook page? Is it run by a recognized medical association, or by someone unknown?
- Are they trying to sell something? Sometimes they try to sell their products by saying things like "This medicine will make you feel better." Don't be fooled by that.
- Does it sound too good to be true? If you see something like "The secret to curing AS in 7 days," it's probably a lie.
- Is this information new? Is there a scientific basis? Check to see if the information published is research-based and up-to-date.
Trusted international organizations and websites
There are still few AS organizations that are specific to Sri Lanka. However, there are large international organizations that research this disease and help patients all over the world. Although these websites are in English, they publish very valuable and accurate information about the disease, new treatments, exercise, and how to live with the disease. If you are a little familiar with English, these will be very useful.
- Spondylitis Association of America (SAA): This is the leading organization in the United States dedicated to spondylitis conditions, including AS. Their website (spondylitis.org) has a wealth of patient conferences, support groups, and up-to-date information.
- Arthritis Foundation: This is a large organization that provides information about all forms of arthritis. Their website (arthritis.org) has a dedicated section on AS.
- Arthritis National Research Foundation: They fund research to find a cure for arthritis. You can find out about the latest research on their website (curearthritis.org).
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): This is a US government agency. The information published on their website (niams.nih.gov) is very reliable and scientifically proven.
Online communities where you can read other people's experiences
Social media platforms allow you to connect with people around the world who are living with AS just like you. The support you receive can be a great source of encouragement. But, as I said before, don't try anything without talking to your doctor.
| Platform | Description |
|---|---|
| If you search for Ankylosing Spondylitis, you will find many groups. Some are private groups, and you have to request to join. In these, other people ask questions and share experiences. | |
| This is another popular place to share information and ideas. Become a member of the community called `r/ankylosingspondylitis` where you can ask questions and read about other people's experiences. | |
| Instagram / Twitter | You can find relevant posts using hashtags like `#ankylosingspondylitis`, `#arthritis`, `#chronicpain`. However, you should be very careful about the accuracy of the information in these. |
How do you check if an online account is trustworthy?
- Listen to your gut: If something feels wrong or fake when you look at the account, it probably is.
- Look for Verified Accounts: Accounts from large, reputable organizations have a blue tick next to them, which means the account is real and not fake.
- Question the quality of the information: As mentioned earlier, always think about who is doing this, is it for sale, and is it scientific.
The journey with this disease can be lonely and difficult at times. But with the right information and the right support, you can manage the condition well and live a happy life.
Take-Home Message
- You are not alone in your journey of living with Ankylosing Spondylitis (AS). Thousands of others, just like you, are living with this condition.
- Your treating doctor is your best source of information. Talk to him or her first about anything.
- Although the internet, especially social media, is a great place to get information, don't believe everything you read. Don't assume that someone's personal experience will apply to you.
- Before trying any new exercise, diet, or anything else, be sure to ask your doctor if it's right for you.
- Even though the websites of international organizations are in English, the accurate, scientific information they provide will be a great help in increasing your knowledge.
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