I think its important to highlight that not everyone with AS is HLA-B27 positive. Let me know if you are positive or negative!
I'm HLA-B27 negative.
I am HLA-b27 positive.
Thank you for sharing. How was your journey to getting diagnosed? Hope your doing well.
Nicky (Team Member)
I am HLA-B27 positive. Or as my wife says,
"rick you are lucky I let you live here in my presence". Oh, maybe we were talking about something else.
I came up100% positive for the HLA-B27 and found out a little over a yr ago. It took my own research and changing doctors, health plans, etc...and 3 yrs to get the diagnosis. I didn't want it, but I knew I didn't have everything else all others were trying to tell me I had. Hahaha...I should give my hubby a medal of valor for his continuing emotional support! Or maybe that's just my sleeplessness talking,, lol
I am HLA B27 +
I am HLA-B27 positive. I have had a diagnosis of AS for nearly 40 years. During this time I went to several different rheumatologist due to moving or Dr leaving, etc. Several times with a new Dr, when I said I had AS they would all but say I was lying. Three, yes “3” times I’ve had my HLA-B27 tested. Then these Drs would look at my X-rays and say, “You have AS”! You just have to keep a sense of humor!
that's interesting. I wonder if it skips generations and she might be a carrier? I will look into this more. Thank you for this information.
My daughter was tested recently and was told she carries the genetic code for it but is thankfully negative. But that it can be passed to another generation, which would mean my grand children and my thoughts are.."Oh please God no, not them." And you're welcome. Every little bit of info helps.
Katie Saville Moderator
I am HLA-27 positive. With that being said, my two closest friends who also have AS are both HLA-B27 negative. It breaks my heart because I was diagnosed within 5 months of my symptom onset because I was positive. They were not so lucky and had to fight for their diagnosis' just because they were negative. Definitely needs to be more awareness surrounding this topic! -Katie, Team Member
Steve Tuffin Moderator
Hi I am negative too. My wife and I agree, looking back, I probably had it at least 10 years before it was diagnosed. It certainly would explain a lot. Here in the UK (sorry, I'm not sure if you are here or in the US), there has recently been a drive to reduce the diagnosis time. Apparently, people like me, who went a long time before getting diagnosed, have not such a rosy longterm outcome. Having said that, I am doing okay, I think, given that I am in my 22nd year of being diagnosed. On we go. :0) Steve- Community Advocate
I am HLA27 positive and went undiagnosed for 15 years. I was told to lose weight. I was told I was getting old (at 30) and I got discouraged and stopped trying to figure out what was wrong.