Great video!

AS is a painful disease and often we are not treated like that instead we are treated as someone who merely has chronic pain..

Good story. Get well soon.

Thank you for sharing. Stay strong.

Your story means a lot to me. I've been diagnosed with Fibromyalgia for about a year, and just recently diagnosed with A.S. I was put on prednisone before I got the results of my MRI, and it was one of the worst things ever. Then I had a shot in my butt of god knows what. The medical assistant said the thing real quick. I can't take nsaids or anti inflammatories, because I over did it awhile ago, so they affect my stomach. My hip went out the same way and that's exactly why I feel I can connect with you. And I am the same way in regards to work ethic. Are you using any walking aids?

Cheers, Steffi. Thanks for sharing -- we have much in common. I'm hoping that you are still around & I'm about to check if you've made updates...

My sacroiliitis flared up terribly & I was officially diagnosed with SpA after I had a surgical abortion 4 months back. Wish I had cancer instead of AS. Even cancer is curable in its initial stages, but not AS! This is the worst!

You're a very brave girl thank you for sharing.

I don't want to live anymore spondylitis ended my life

Yeah, the rheumatologist I first had didn't like me anymore after I researched and decided not to take the drugs he prescribed. Some of the men doctors really don’t like it when female patients don’t follow their directions. I changed my diet, and found a new rheumatologist. She respected that I didn’t want to take the drugs but still helped me.

Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou

It has been so hard for me to find any support for this disease! I was finally diagnosed in 2014 and there are NO rheumatology doctors in my area so I am just stuck!

How do you survive the nights? I suspect I have this and the nights are so painful I panic. My joints also have that poping sound now, all over and Im afraid to move as normal. I dont know if its AS, the emdical care insists its psychological and refuses to investigate. I'm so scared..

Why do we have such a hard time getting diagnosed? Maybe it’s because there is no doctor wanting to deal with the Spine so we have to suffer because of it !

It's interesting how many people with AS have a history with (pilonidal?) cysts ... I wonder if one could trigger the other ...

I don't think I know anyone with AS who was diagnosed quickly. Especially those of us that don't have the gene for it. That said I wonder if you worry about progression of the disease without treatment? I've been on almost every Biologic and have had massive allergic reactions to most. I'm also alergic to NSAID'S and the steroids have been used too often for them to work anymore. That's also something they wont always tell you, the steroids wont work forever. Currently I am being treated with Opioids and Humira. The Humira has been stop and go for over a year due to infections. I'm on weekly injections and now on week 5. I've only had one flare and it only lasted 48 hours. That said I am seeing progression of the disease. My rib cage, neck, shoulder and spine movement is all down. So that is why I have chosen the biologics. I have 3 kids to raise and I can't afford to be in a wheelchair or have a machine breath for me or pump my heart. We all have to make the best choice for our lives. I have to slow down the progression and I'll do anything to make that happen. Also I'm on an antiinflamatory diet/a stricter version of the Fodmap diet. It really does help, but it's definitely not for everyone. Good health to you and yours!

How is it that you’re video along with one other is the only AS you can find on live real camera? Have you had trouble with others being honest about their experience.