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What do you want to see on our website / forum? #250387
04/01/13 05:35 PM
04/01/13 05:35 PM
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JamesChoi Offline OP
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I am trying to find more ideas for our website and would like to know what you think. So far we have personal stories, medical reasearch, information about spondylitis and support groups, advocacy, raising awareness, etc. That is waht I can think of off the top of my head.

Do you have any ideas? Is there something you want to see or you think is missing on our website? Any answer is fine and if you don't feel like posting please send me a personal message.

Please help me help the Spondylitis community as much as possible.

Thanks.

Last edited by JamesChoi; 04/05/13 03:58 PM.

     
Re: What do you want to see on our website? [Re: JamesChoi] #250396
04/01/13 09:19 PM
04/01/13 09:19 PM

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sequoia
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james..here are my thoughts

you know james, you already do a huge job and it is very successful as far as i am concerned. i refer all the new folks i encounter to the "home" button when i first post to them. i feel not many have started there as they are looking for the forum perhaps right off the bat.

i think the home button says it all.

i will ponder this, but right off hand i cannot think of anything. it is well designed and professional. the forum is likely the most active place.

thanks for asking...

sequoia

Re: What do you want to see on our website? [Re: JamesChoi] #250401
04/01/13 09:41 PM
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The site is wonderful IMO but since you're asking...

Make it easier to get to basic info about spondylitis - from the front page.

Feature info on evidence based treatments - and treatments that do NOT have evidence basis (either shown not to work, or no evidence one way or another.)

From the main page, a clear way to get to a page with up to date info on meds - kind of a medication FAQ on steroids - common side effects, likelihood of helping spondies (and what % improvement one could expect to see, how soon.... etc.) A lot of things come up over & over & over again in the forums as new people come looking for info on key topics. If we could point them towards a very up-to-date page that contains that info (e.g. which NSAID should I try first?) - it would be great and avoid a lot of redundant discussions.

In the forums - fewer "sticky" threads. I can't be the only one who just ignores them and skips past them .... but they take up half the screen which is annoying.

Thanks again for all you guys are already doing smile


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website? [Re: JamesChoi] #250408
04/02/13 02:24 AM
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I agree with the suggestion of FAQs. The same topics come up time and time again and it would be great if the main SAA website had a list of FAQs that newbies could be referred to.

Thanks so much for all you do!


Barbara/Age 66. Diagnosed with SpA in 2009. Unable to take NSAIDs due to gastritis. Failed sulfasalazine, Humira, Actemra, Enbrel, Rituxan, Orencia and Xeljanz. Currently taking Cosentyx and prednisone.
Re: What do you want to see on our website? [Re: JamesChoi] #250511
04/05/13 03:53 PM
04/05/13 03:53 PM
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Thanks for all your input. I will consider all of them and please if you are new to this topic please keep adding your thoughts. I will keep checking this thread. Any new forum topics are also welcome.

It is also important to note that the opinions of new and old users of this site and forum are needed so we can produce content for all users and not just one target audience. Of course being new to spondylitis and not will also be considered.

Thank you for all your support. Everything will be considered.

Last edited by JamesChoi; 04/05/13 03:57 PM.

     
Re: What do you want to see on our website? [Re: JamesChoi] #250514
04/05/13 04:28 PM
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Originally Posted By: JamesChoi
It is also important to note that the opinions of new and old users of this site and forum are needed so we can produce content for all users and not just one target audience.

I can't imagine anyone disagrees with this! Hopefully you did not get that impression as it was not my intent and I'm sure not the intent of the others either.

I'm sure that different groups of people use different parts of the site; active users of these forums are probably a small minority of the site's visitors.

Thanks for inviting our feedback smile


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website? [Re: JamesChoi] #250670
04/09/13 09:10 PM
04/09/13 09:10 PM
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Hey Jen

I only wrote that to invite more opinion. Everyone counts. Thanks for your responses.

James


     
Re: What do you want to see on our website? [Re: JamesChoi] #250674
04/09/13 10:55 PM
04/09/13 10:55 PM
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Frequently people "arrive" on the site bewildered "lost" and in pain.The warmth that greets them here is wonderful

I think it's important to frame steps which people can take to access accurate diagnosis and treatment. Centers for excellence by state and/or medical centers MDs by state who have demonstrated leadership in treating AS and it's related conditions (notably uveitis) should imho greet the new person. Basically our site should say 1st NOW that you are here this is who you should strive to see. It could be listed by say specialists by state. A list of expert practitioners updated as it changes.

My other thought is have a category for insurance/funding related questions.

Finally a category for the unsolved, horrendous cases borne by people where all else has failed a category where all of us (and more) can assist. Those really hard cases that no one can seem to get solved. I think linking this category to a AS sponsored MD or MDs who can weigh in and make referrals. There is no reason for someone to arrive on the site lost, rejected and in pain and leave the same way.

Thank you for listening.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: What do you want to see on our website? [Re: JamesChoi] #250785
04/12/13 12:18 AM
04/12/13 12:18 AM

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sequoia
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don't know how you could do this, no real suggestion...however, folks just post their symptoms frequently then go no where else at first. i think they do not look at the dates perhaps and then they think others have been responded to properly. i only get there every few days and/or weeks sometimes to welcome them and ask them to the main forum.

it is more often than not if they post there and no one has commented to them, they never come back.

somehow tell them this is just posting and discussions are on the individual forums...like list your symptoms here, then discuss on the forums...

don't know. just a thought.

Re: What do you want to see on our website? [Re: JamesChoi] #250791
04/12/13 01:06 AM
04/12/13 01:06 AM
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I agree with Jen regarding reducing the "sticky" threads. I view the boards on my iPhone and it does take up half the screen especially now that there's more - maybe make a separate Sticky board. (Why the word "sticky" anyway?).

You guys do an incredible job. Thanks so much for your dedication and for allowing us to provide input.


Dx: Spondyloarthropathy/Connective Tissue Disorder (2/12), AS (9/12) HLA B27 negative, sacroilitis on x-ray - Current Meds: Methotrexate (20 mg), Leucovorin (30 mg), Protonix, Relafen, Vicodin and Tramadol PRN, Enbrel (9/12) Humira (7/15)
Re: What do you want to see on our website? [Re: JamesChoi] #250816
04/12/13 05:22 PM
04/12/13 05:22 PM
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Hey thanks everyone.

I really like Whitecell's thoughts that begin with - Now that you are here. I would say, if you are first diagnosed or you are just searching symptoms online then an FAQ and a step by step process might be more important than just stating medical facts about spondylitis.

I am already planning to add a section pertaining to managing as with health and fitness so I am glad someone already wants to see it.

For the forum I'm not sure how we will change it yet...but we will. So far this is my favorite message board - http://stackoverflow.com/. It has nothing to do with health or well being but the way people interact with each other and each question is great. So the most important questions are the focus of the site. If you have a link to a message board that you like please reply with a link so I can take a look.

Thank you for all your responses. This is really helpful.

Last edited by JamesChoi; 04/12/13 05:23 PM.

     
Re: What do you want to see on our website? [Re: JamesChoi] #250852
04/13/13 06:31 PM
04/13/13 06:31 PM
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WhiteCell Offline
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I agree Maybe FAQ specific to the areas that always get brought up. Pain, biologics, mobility, what works...? Just thinking out loud.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: What do you want to see on our website? [Re: JamesChoi] #251047
04/19/13 05:32 AM
04/19/13 05:32 AM
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I agree with Jen. I would like to see a more up to date medication list with more information. I like to know what options are available when something else isn't working. It gives me time to research the med and decide if it is right for me.

Would it be possible to follow some members and see what meds worked for them? Like a spondy med success rate? I don't know if that is possible. (sounds like a great deal of work now that I think about it). It would just be interesting to see what treatments had a good success rate among our community. As someone else said I'm just thinking out loud too..


lori
diagnosed USpA Nov 2010. Changed to As 2012. Low Vit D
suffered since teenager multiple surgeries.IBS, Migraines, carpal and tarsal tunnel, TMJ, (failed Enbrel& Humira),Started Remicade sept. 2012,Methotrexate,Prednisone,Relafen, Amitriptylin,Gabapentin, Fioricet, Topamax,,Protonix,Amlodipine, Vit. D, Folic acid,
Re: What do you want to see on our website? [Re: WhiteCell] #251084
04/19/13 11:38 PM
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Originally Posted By: WhiteCell
Finally a category for the unsolved, horrendous cases borne by people where all else has failed a category where all of us (and more) can assist. Those really hard cases that no one can seem to get solved. I think linking this category to a AS sponsored MD or MDs who can weigh in and make referrals. There is no reason for someone to arrive on the site lost, rejected and in pain and leave the same way.

Thank you for listening.


I agree - i try not to post all of my whining and complaining, but the search function sometimes pulls up soooooo many of the same posts that contain the specific word/phrase i'm looking for, and while all the posts are IMMENSELY helpful sometimes combing through the results gets tedious.


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
Re: What do you want to see on our website? [Re: JamesChoi] #251085
04/19/13 11:39 PM
04/19/13 11:39 PM
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on that note - maybe we can fix the search function? maybe it can search all of the threads/site? i don't know - just a thought.


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
Re: What do you want to see on our website? [Re: JamesChoi] #251473
04/29/13 03:32 PM
04/29/13 03:32 PM
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Seems like the number of "sticky" threads has been reduced wink ... thanks!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251870
05/08/13 05:37 AM
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Greetings James
My first impression of AS site is fantastic, thanks to you and all involved making it happen since this is a great and unique source of information.
I like to suggest better search capabilities such as indexing for the site. As an example I am looking for topics related to Iritis or Uvitis and I am sure this has beed discussed many times.



Sfoudeh
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251955
05/09/13 04:13 PM
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Yup the stickies have been reduced. For the search engine the new website will have a new search engine so we'll see how that goes. For the forum I'm not sure what we will do yet so I'm not sure about that either. I'll try to figure out what to do.

Again, thanks for all your input. I will keep checking this thread periodically.


     
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251961
05/09/13 06:02 PM
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When you click "search" you can click on "advanced search" which brings you to this page:

http://forums.spondylitis.org/ubbthreads.php?ubb=search

babygirl & Saeed, you can search on one forum or all, for a keyword in a title and/or post, for whatever time frame you like.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website? [Re: JamesChoi] #254234
06/21/13 01:17 PM
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Thanks so much for striving to hear from all and make the site so helpful. I'm newly diagnosed, need to start exercising and confused about which types of movement will be better/worse/healthier/riskier for me. I realize the disease affects us all quite differently, but I'd welcome any wisdom on this topic.

Re: What do you want to see on our website? [Re: JamesChoi] #254701
06/30/13 11:26 PM
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James, I also love StackOverflow. In case you haven't heard, one of the co-founders of that site (Jeff Atwood) has started a new company, Discourse. His goal is to modernize discussion/forum software with a more usable interface than the free ones we've been using for the last decade. I think it's definitely worth taking a look at.



Cincinnati Joe
Re: What do you want to see on our website? [Re: JamesChoi] #261808
12/16/13 07:04 AM
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Hi James,
Pardon my ignorance if this function does exist. (if it does, i can't find it..)
I'm new as you can see. Would it be possible to have an internal search function so to query lets say by subject matter. I've seen this in the past on another forum..

And like the other folks have mentioned here, I agree.. From what I have viewed so far, you have done an excellent job here.

ricky

Re: What do you want to see on our website? [Re: JamesChoi] #261812
12/16/13 03:55 PM
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welcome ricky, why don't you come on over to the main forum and introduce yourself and tell us your story.

sequoia

Re: What do you want to see on our website? [Re: JamesChoi] #261816
12/16/13 05:04 PM
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Ricky, up top in the blue area towards the right, it says "Search." Click on "Search" then click on "Advanced" and you can search on keywords in one forum or all forums, with whatever date range you want.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website? [Re: JamesChoi] #263269
01/11/14 04:30 PM
01/11/14 04:30 PM

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sequoia
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how about directing me to the mankowski pain chart which used to be here. or reposting it under some other forum.

i was just part of an uncomfortable discussion regarding pain charts. i know it disappeared when we were appropriately downsizing the forum list. is there any way it could come back somehow.

if it is still here somewhere, please direct me to it. i have looked and am not sure.

thanks, chris

s.

Re: What do you want to see on our website? [Re: JamesChoi] #266667
05/23/14 09:26 PM
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I'm late to the party here, but very new to the site, so please excuse me. A chat room feature would be nice. I have no idea if the site would support one but I think, if it could be done, a chat room could offer a place for special support, such as a venue for members to discuss relevant or pressing issues in real time with each other, keep each other company in times of insomnia, even featuring special chats on select topics, perhaps sometimes hosted by guest moderators or commentators presenting information on areas of personal expertise.

Re: What do you want to see on our website? [Re: Eilatan] #268313
09/06/14 04:16 PM
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YES!!! CHATROOM!!!!!


33yo man from Brooklyn, NY
Remicade infusion 6 week intervals
Premature wear to most major joints and entire spine.
Sleep apnea
Fatigue
Anxiety
Re: What do you want to see on our website? [Re: JamesChoi] #269175
11/05/14 07:24 AM
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I am new, and I agree that a FAQ would be nice. You already have one but it only pertains to the use of the forums, not the subjects/questions that commonly come up on them. Thanks for a most helpful site.

Re: What do you want to see on our website? [Re: JamesChoi] #269181
11/05/14 03:47 PM
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WyLee, have you checked out the main SAA site? If you scroll to the top of the page you will see a row of buttons - Home, About Spondylitis, etc. These take you to different sections of the main SAA site where you can find lots of info.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: What do you want to see on our website? [Re: SouthernMoss] #269185
11/05/14 10:09 PM
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Hi Ginny, I have been browsing around on the site and learning a few things. Thanks!

Re: What do you want to see on our website? [Re: JamesChoi] #271601
06/07/15 11:16 PM
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I am not sure if such a thread/topic exists (and please let me know if it does - i've been searching for weeks now) - but I wouldn't mind having a 'treatment/med' thread- as there is an alternative treatment/diet thread. But when you're new & you may want to just see how folks are faring on a certain treatment - that might be a good 'board' to have up. Just a thought. I find that if I enter a keyword on search it gets a bit confusing & an actual thread to be directed to may be easier for folks. Otherwise - I love the site & find it very useful - great job by all. Keep up the good work.

Re: What do you want to see on our website? [Re: JamesChoi] #272485
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I suggest you update the forum software to something a little less ...primitive? It is so outdated and user-unfriendly that its insulting.

Last edited by epidemia78; 10/13/15 05:16 PM.
Re: What do you want to see on our website? [Re: JamesChoi] #273812
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Nebraska
Hello,
As a new person I would like to see there being perhaps some help for those like me who have no clue what to do first.
Perhaps a place to go to where you could find a professional in your state?
Perhaps a place where we could be taught what things to tell the doctor, what kind of doctor, what kinds of tests, what kinds of other conditions to also be tested for at the same time, etc. You go to the doctor, don't get answers, have to fight for all information you get, have to ask for tests, yet are so blind to what to go after. HELP for newbies. Those undiagnosed and those newly diagnosed. I NEED HELP!!!!!! Having said that, thanks for starting this forum, thanks for the help I have already received for I am not in a good way at this time. Lord bless!


Yet waiting and pressing in for diagnosis.

Thanks for listening and for your caring support.

Laughter is the best medicine after all.
Re: What do you want to see on our website? [Re: JamesChoi] #274056
04/18/16 08:56 PM
04/18/16 08:56 PM
Joined: Mar 2016
Posts: 411
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Posts: 411
There should be a business section here. I am sure a lot of people who may not be able to work a normal 9-5 start businesses of some sort and it would be nice for them to have a place to offer whatever it is that they do to fellow members. It's always nice to help support our own.

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