Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Are there better Forums than this one?

Trying not to be negative, but there is little activity, and much of that is people asking about some very obscure and probably unrelated issue.

This site has some utility for people looking for a little pick me up when they are down, but not much beyond that.

Legit question, are there better sites out there?

Thx,

Mike

Hi Mike,

I hope this is a rallying call to people to participate in the Forums. There is nothing like it. people can participate without divulging their identity. information here is not sold or otherwise monotonized to pharma or other companies. unlike FB and other social, The people on the forums are truly supportive and knowledgeable.

there are over 20,000 people that have current registration on the forums. more than any other place. I find the search bar particularly helpful. there has never been a even rare AS issue that I wasn't able to find past conversations and useful information here.

We probably just need a few people to spread the word about the Forums on social media to get a robust honest, supportive, and helpful Forum.

Hi, Mike:

I'm absolutely certain that there are!

HEALTH,
John

Many people went to FB, there are many many FB spondy pages.. Though I question the privacy and came back here. Plus, there are more people pushing their agenda rather than facts.

I got tired of the FB groups and the people who monopolies them. Also the admins that seem to remove people just because they don’t agree with someone’s response.

Mike, I think the answer to your question depends on what you are looking for. If you are looking for information, there is a wealth of information here. The search is a bit awkward in that you can only search 3 years of posts at a time, but once you get used to searching in 3 year chunks, you can find a lot of information here.

If you are looking for social interaction, then it's true that this board moves slowly. That is partly because people are finding answers on the site by searching rather than by participating in discussions. Also, I have noticed that we seem to go through cycles where we have less activity, then things will pick up again. Things are a little slow right now, but they will pick back up.

I am a member of a couple of FB groups for AS, but I don't participate much. They can be nice for emotional support, venting frustrations, etc for those who need a place to do that. But you have to watch for people giving opinions as if they are facts. That seems to happen more often on social media than it does here.

I for one have stopped reading and posting here mainly because I don't need the stress and negativity that I sometimes see. I try to give back to the community that's given me so much but I feel like I don't have anything to contribute these days.

It's different for everybody but I know I sometimes need to stay away from AS while I'm feeling good so I can have something like a "normal" life. If I start to read about AS and other people's problems I automatically think it will apply to me and start getting anxious.

I feel better just living my life and staying hopeful.

I think that this forum is uniquely valuable. Many of us spent years achieving an accurate diagnosis and for that single reason this forum is so helpful to people, who, for the first time are simply "lost" in a new set of circumstances e.g. new symptoms, new doctors and questions. Lack of information is a forumla for fear and anxiety....This is a strong forum. I've never felt other than supported here.

Well said, WhiteCell.

This forum has been invaluable. It's true that Facebook has likely slowed down the conversation here (and at other topic-specific forums). But Facebook doesn't give the wealth of searchable info a forum does, nor the sense that you actually are getting to know people.

As education has increased and more medications have come on the market, things have slowed down a bit too because blessedly, more people are getting help early enough before damage is severe.

As someone else mentioned though I tend not to frequent the forums so much because I need to be more than my disease. I am more or less in medication-induced remission, but I have a lot of damage from before I got treatment, especially in my neck. I went through my stages of hope/ grief/ acceptance, but I still don't like to spend too much time in that head space of "I have this disease." It can be draining. So I pop in occasionally, answer some questions when I can, ask a few on occasion, and then don't stop back in for weeks or months at a time.

It's a great forum with good info and reasonable moderators. We are fortunate to have it.

I am not sure how much better a group of sick people can be.

Truth.

Much better than the the Alzheimer's forum. Everyone logs in only once.

Forum participation has dropped significantly over the past few years not just here but on other forums as well. I used to be involved in 2 wood working forums. Both are no longer. I've seen participation drop on motorcycle forums as well. There of course are some exceptions to this. But even on active forums there is a small core group that does most of the posting. 15 years ago this was a very active forum.

Yea. Facebook groups are taking over but the facebook groups lack threads and discussions are easily lost and no real way to look up history so the same things are discussed over and over.

I don't post a lot anymore but I used to love the discussions and arguments on this board

Facebook group there are 2 seems very active to me... then again iv'e only joined for a few months.

I too was wondering why it seems so quiet We used to have a lot more posting going on here when I was a regular contributor some years ago.
It is a bit tricky to use this forum on a mobile device, as opposed to a computer. I am using an ipad to write this, and the text is teeny tiny!
SAA folks, maybe this could be improved please? Let's face it, most internet use now is on an iPhone or equivalent, so the forum needs to be compatible.

I have sent an email to SAA’s Elin Aslanyan asking about making the forums easier to use on mobile devices.

I am fairly new to the forum, and find it useful especially due to the search function. I can also understand folks not wanting to visit when trying to focus on aspects of life other than illness. I would probably feel differently if I expected support or encouragement from this forum, but I mostly get that from offline places. Social media is the trend these days; as others I have noticed many different forums slowly fading while FB and such are growing.

May I ask, do you have alzheimer's?

there was a study in august that found an association between AS and alzheimer's. That is not something that was on my radar and I don't recall seeing any other studies on this.

so I'm really curious to hear people's experiences. https://doi.org/10.1016/j.phrs.2022.106325

I found this forum so helpful when I was first getting my DX. After I went in to medication induced remission, I slowed down posting and coming to this page. I do still come here occasionally when I have questions.
This is THE best forum for AS and associated diseases.