Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you call it?

Hey guy,

I agree with you, use to try and tell them and they would say ankles what??? then I would say like R.A. they were like whats that? so now I just say an immune disorder and even then first thing out of their mouths are AIDS...pttt! when you try and tell them it's your body attacking itself is usually when they start thinking I need the straight jacket..lol I have usually walked off by then..leaving them to wonder just what the heck is wrong with her..lol

I know that has to hard also, my 1st Rhumy said it was Reiters syndrome, then people said well only men get that and oh that is caused by a sexually transmitted disease! WTHeck!!! then he changed his mind several times and I didn't really get a diagnoses until I went to the Immunologist I have now..just keep on keeping on.

Hi,
Just for a play on words...
Some people call it "pokerback disease" and "tin mans disease"
Those are actual synonyms to AS, and there are many more synonyms out there, but the more common synonyms are "von Bechterew disease" and "Marie-Strümpell disease". I think people in Europe may see those terms used more often.

I think the simplest explanation for me might be:
I have Anylosing Spondylitis, an arthritis which can eventually cause the joints in our spine to join one another.

Welcome to kickas.org.
Take care,
James

Hi. I usualy say I have an inflamatory auto immune disease that affects the spine and many joints and can also affect the organs.
The reaction I get from the is usualy oh sh** sorry to hear that.
Some will ask how do you cope. To wich I reply, A lot of the time I don't but I keep fighting on.

It's also known as bamboo spine.

I just say "a weird type of arthritis..." it works..

I usually tell them "inflammatory arthritis, similar to RA". If they persist, I add, "In RA, immune system attacks the synovial lining of the joint, and in my case, it's attacking all the tendons and ligaments around the joints, which can lead to fusion" Some will seem to understand (I work in medical field), others will glaze over and wander away.

Maybe I'll go with "a weird type of arthritis" and not spend the educational time unless they really seem to want to know.

I have "ankylosing spondylitis"... yes, it is a long difficult latin name, but at least it's shorter then "spinal-petrification-from-too-many-years-of-playing-with-basilisks-why-oh-why-didn't-I-listen-when-mother-tried-to-warn-me-itis", so count your blessings.

purplemj, aloha

i say," It's a systemic arthritis centered in the spine; it attacks other joints and the eyes at times. some days are worse, some are better; it's not a lot of fun."

OK? OK!

I tell people I have an inflammatory arthritis that main affects my spine, but does affect other joints as well.

Then, when they tell me about that crick in their neck they had a few weeks back, I refrain from heaving them through the nearest window!

Hugs,