A Big Word and a small term

Endoplasmic Reticulum

and HLA-B27

Endoplasmic Reticulum is a  big word that I remember from high school Biology, not my best class ever.  I remember the word because it sounded funny to me, like you could cast a Harry Potteresque spell with it. When a conversation became too much or just plain boring, sometimes I would pop off with, “Do you know what endoplasmic reticulum is?” And then I would recite the definition,”It’s a network of membranes within the cytoplasm of cells, where proteins and lipids are synthesized.”  If I was asked what that meant, I would respond with, “I have no idea.”

The irony is that endoplasmic reticulum might possibly play a part in the inflammatory eye disease that has become a part of my life. It has to do with a “pro-inflammatory stress response” in a theory about hla-b27 called “Misfolding Theory”. It’s only one theory, and there are many others.  If you want to read about them, there is a lot of information online.

~~A helpful side note:  When you are looking for medical information online, make sure that it is from a reliable source, such as a scholarly journal, or a research university, or an organization like http://www.ohsu.edu/xd/health/services/casey-eye/your-eyes/eye-disorders/other-diseases/uveitis.cfm , or spondylitis.org  There is a lot of misinformation available too, so be careful!

While endoplasmic reticulum is the BIG WORD, hla-b27 is the small term that has become relevant with nearly every new doctor I see.  It’s like name dropping, only it’s, by the way, I’m hla-b27 positive.  The response is usually a boatload of questions that lead to a group of diseases associated with hla-b27 (spondyloarthropathies).

Hla-b27 is a genetic marker that I have.  It’s not the cause, but it’s an indicator that helps the doctors know what symptoms to ask about and where to aim in treatment.  A small percentage of the general population have this gene and even smaller percentage develop any sort of disease.

The odd part about having the hla-b27 marker is that at times I have had different symptoms from the lists of things to look for.  But the symptoms come and go, and for me none of them have created a picture that fits the criteria to give a diagnosis other than chronic uveitis.

Another bit of possibly helpful information is that the genetic marker was found during a battery of blood tests when they were trying to figure out the cause of the iritis that all of this began with.  All of those blood tests that they do are important, because they help the docs figure out how to treat you.  And even if there’s not a definitive cause, it’s helpful for you to know as well.

One of the most important things to keep in mind is that everyone is different.  Every treatment regimen will be different.  All hla-b27 people do not look alike, not even their eye symptoms look alike.  But knowledge really is power.  It’s good to know what symptoms to alert your doctor to if they happen, because the earlier you can figure out treatment, usually the better.

It’s weird being different, going to doctors all the time, but I’ve kinda gotten used to being weird and rare.

 

Please…feel free to ask a question.  Your comment or sharing a thought is also welcome.

 

 

 

 

 

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