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I am so happy to find this group... Here is my (daughter's) story...

My 15 year old daughter (active club soccer player) woke up one morning last year and could not walk due to severe pain in her left lower back. This followed no injury or anything unusual that we can think of. After a four day hospital stay and antimflammatory drugs she was diagnosed with sacroillitis. A few months later she was diagnosed by our Rheum with Ankylosing Spondilitis. She is now on methotrexate and humira and getting steadily better, but still not back to her athletic self. I don't know if AS is considered Psoriatic Arth. but your group sounds informative and welcoming. This has been a long, confusing ride for the family-- she has no genetic marker for RA, and no one in the family does. I am troubled by the strong drugs daily.

I guess I (we-- husband, daughter) are in denial still. Why does a 15 year old girl with no genetic history have a typically elderly man's disease? There seem to be so many uncertainies when it comes to rheumatological conditions.

Here is my burning question... if she does have AS, will she be on these strong drugs (humira/methotrexate) for the rest of her life? Or, once the symptoms get better, may she taper back and ultimately not take them at all?

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Hi! Just noticed the blog post. Most activity happens on the discussion board. If you repost there you will likely get more responses.

I was dx with PsA at age 10.... I'm 41 now. Your daughter MAY have remissions (a time period with no disease activity), but there is not cure. It is very important to treat the disease early and aggressively to prevent permanent damage. I am still living my damage to my elbows (they don't straighten all the way) due to inflamed joints when I was young (there were hardly any treatments then).

BTW, I managed to graduate college, am married, and have 2 children, ages 12 and 15. Your daughter can still have a great life.

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I'm sorry to hear that. You will need to work closely with her doctor. But remember that the meds can help her get back to her old life, or close to it, as opposed to being crippled at a young age. This is probably my worst fear for my own kids as well. But it's not an old man's disease. . . Autoimmune diseases typically strike fairly young, and for some can strike in childhood, as with your daughter. There are a few other parents here of young people, as well as patients who have been going through this since childhood, so you have definitely found the right place.