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#271794 - 07/02/15 03:48 PM Other resources?
ontheradio Offline
First time visitor

Registered: 06/29/15
Posts: 1
Loc: Texas
Hey y'all,

I'm Bennett and I was recently diagnosed with AS.
While this forum is freaking fantastic, I would like to know if any of you know of any other good resources for young(ish) people with AS like on social media, other websites, etc...
This is my first post, so please direct me to the correct post if this question has already been answered.


20 year old male college student majoring in broadcasting in Texas.

Diagnosed with AS in early June 2015. HLA-B27+. Also has depression, anxiety, etc.

Rx list: Indomethacin 3x per day, Omeprazole 1x per day, Paxil (paroxetine) 1x per day, Clonazepam (Klonopin) PRN, Hydroxyzine 1x per night, Sumatriptan PRN.

#271801 - 07/07/15 01:30 PM Re: Other resources? [Re: ontheradio]
becca Offline
Registered Visitor

Registered: 02/26/11
Posts: 174
Loc: Ohio
Hi Bennett and welcome!

i'm not a good one to answer your question, but saw no one had posted and wanted to welcome you smile

you can try posting this question in the main forum as well. this forum doesn't get much traffic so it seems. wish it did. that would be awesome if us young people would take the time to post here more. for most people, we seem to only be on here when we are doing bad. for me, i don't have internet at home, so i'm just on when i have access.

don't know about other resources specifically for younger people with AS, but if you haven't already you should check out facesofas.com awesome stories on there. think about submitting your own if you haven't already.

hope to see you around on here.

i can't fall back i came too far, hold myself up and love my scars...

#271835 - 07/14/15 07:33 PM Re: Other resources? [Re: ontheradio]
iviary Offline
Registered Visitor

Registered: 11/29/10
Posts: 2008
Loc: North Texas

There are quite a few social media communities for AS out there. Search for tags or groups with spondylitis in the name on whichever networks you use most. I used to participate in quite a few #rheum and #spondy chats and made lots of connections with spondylitis and other forms of inflammatory arthritis on Twitter, but ultimately moved away from that as I began to need less daily support and also as I decided I wanted to keep my daily struggle pretty private from most people (particularly those who know me IRL). Any of these communities will have an age range, but the "younger" the demographic is overall on a particular website, the younger the group will be who is talking about their health problems. I've seen quite a few teenagers discussing their psoriasis and psoriatic arthritis on Instagram, for instance. I'm sure there are many talking about AS in Instagram as well; I just noticed the PsA users because I tagged some photos from my local Psoriasis Walk and got some attention from that community. I currently belong to a private Facebook group for my local SAA support group, but it's mostly women age 40+ who participate in the support group, and thus that's mostly who we see on our Facebook group as well (we only let in people who attend at least one meeting in person in order to keep everyone feeling safe about sharing). I choose not to participate in any public Facebook groups for my health problems, because I don't want what I like or comment on to end up in all of my contacts' news feeds. Just do a little clicking around and a little thinking about how private you want your participation to be, and jump into whatever communities look interesting and welcoming to you!
Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol


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