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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
Joined: Feb 2011
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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
04/01/13 09:41 PM
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Cincinnati, OH
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JenInCincy Offline
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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
04/02/13 02:24 AM
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Barbara57 Offline
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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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JamesChoi Offline OP
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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
04/05/13 04:28 PM
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JenInCincy Offline
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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
Joined: Feb 2011
Posts: 32
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JamesChoi Offline OP
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JamesChoi  Offline OP
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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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WhiteCell Offline
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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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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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Southeastern Massachusetts
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Bella22 Offline
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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)
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