SJOGREN'S SYNDROME

Mary Scriver with nice red cheeks.

When my mother-in-law was in her Eighties, basically healthy but beginning to show signs of age, she was indignant that when she had some disorder with a fancy foreign name (which made her proud because it was distinctive), it always turned out that all her friends had it, too.  Meniere’s syndrome, an inner ear problem which made her walk like a drunk; diverticulitis which made her stomach hurt and so on.  She probably had diabetes 2 by today’s terms, but no one knew about it then.  Likewise, I never heard anyone talk about Sjogren’s syndrome.  

But it appears I have it.  Not that it’s much, just a pesky marginally auto-immune disorder.  No doctor has said I have it, but no doctor in the half-dozen years I’ve been complaining about my eyes has anyone talked about ocular rosecea, though the telltale scaly patch on my bright pink Scots cheeks is right under the eye I complain about the most.  Finally my eye doc talked about “dry eye syndrome”.  In the internet era, that’s enough of a clue to unravel what’s happening.

He didn’t say what to do about it, except use eye drops, but I soon found out about using hot compresses (washrag under the hot water tap, maybe with a bit of baby shampoo) to soften and remove the thread of hard white rime that I’d never noticed before.  Do that morning and evening, use drops, and — hurrah — the eyes are comfortable again.

But then I got to thinking about the fluids of the face.  Sometimes if I’m a bit dehydrated, my skin shows wrinkles.  If I’m pushing water, my skin is smooth.  Under extreme stress, my cheeks get fat.  What I mean by fluids of the face are tears, snot, phlegm, drool, slobber, saliva, lymph, mucus — including both the inconvenient forms like edema (swelling), painful sinuses, or a drippy nose and the proper forms like the film on eyeballs, back-of-the-throat drainage of sinuses, and mouth moisture.  When I googled my list, what I got was Sjogren’s Syndrome.  

Besides a dry mouth and dry eyes, symptoms often included are fatigue and muscle ache.  In fact, this is a systemic disorder that overlaps a lot with other scary stuff like systemic lupus erythematosus (which my mother always insisted I had though I probably didn’t), rheumatoid arthritis or scleroderma.  DNA analysis identifies at least five different risk-related major gene regions.  It appears that there are vulnerabilities that are activated by environmental challenges.  My body is programmed for rain and fairly consistent mild temps — not the wide swings of high prairie.

But systemic vulnerability can be subtle and hard to detect though there are tests for all the fluids: blood, spit and tears.  Progression or damage can be avoided by supplying artificial fluids like eye drops.  Eyes are the most vulnerable because the surface of the cornea needs to be lubricated to keep it from being scratched or eroded.  And they are the most obvious because eyes look at eyes and notice small differences, which is why people love eye makeup so much.

Fatigue is so internal, fought so hard when people want one to do stuff but meet reluctance, and so seemingly causeless, that it is another of those disorders that become a moral issue.  “Get off your lazy fat butt!”  This adds the molecules of emotions.

But who knows about the suspected culprits?  Even docs don’t.  Descriptions below are from Wikipedia and therefore anonymous, uncheckable.  I left all the links in since you might be seriously interested.  Also, I recommend the document I’ve got here for reference:  http://www.uptodate.com/contents/sjogrens-syndrome-beyond-the-basics.  It starts with basics and then gets more complex until it’s for physicians.

Cell adhesion molecules (CAMs) are proteins located on the cell surface^[1] involved in binding with other cells or with the extracellular matrix (ECM) in the process called cell adhesion. In essence, cell adhesion molecules help cells stick to each other and to their surroundings.

These proteins are typically transmembrane receptors and are composed of three domains: an intracellular domain that interacts with the cytoskeleton, a transmembrane domain, and an extracellular domain that interacts either with other CAMs of the same kind (homophilic binding) or with other CAMs or the extracellular matrix (heterophilic binding).

Lymphocyte homing receptors are cell adhesion molecules^[1] which target addressins. Lymphocyte homing refers to adhesion of the circulating lymphocytes in blood to specialized endothelial cells within lymphoid organs, facilitated by diverse tissue-specific adhesion molecules on lymphocytes (homing receptors) and on endothelial cells (vascular addressins).

Addressin also known as mucosal vascular addressin cell adhesion molecule 1 (MAdCAM-1) is a protein that in humans is encoded by the MADCAM1 gene.^[2][3][4]  Addressin is an extracellular protein of the endothelium of venules. Addressins are the ligands to the homing receptors of lymphocytes.^[5] The task of these ligands and their receptors is to determine which tissue the lymphocyte will enter next. They carry carbohydrates in order to be recognized by L-selectin.

Free lymphocytes constantly recirculate in blood after their re-entry from lymphoid tissue, via lymphatic and thoracic ducts. This happens so that the full repertoire of antigenic specificities of lymphocytes is continuously represented throughout the body. Homing happens in tissue-specific manner—e.g. B lymphocytes migrate better to mucosa-associated lymphoid tissue (Peyer's patches), and T lymphocytes preferentially to the peripheral lymph nodes.^[2]

Peyer's patches (or aggregated lymphoid nodules, or occasionally PP for brevity) are organized lymphoid follicles, named after the 17th-century Swiss anatomist Johann Conrad Peyer. They are important part of gut associated lymphoid tissue and usually found in humans in the lowest portion of the small intestine, mainly in the distal jejunum and the ileum, but also could be detected in duodenum.

All this stuff is merely a minute account of how the bazillion molecules of your body interact to make you happen.  Few people will share over coffee that their “Peyer’s patches” are acting up, though they might be and it sounds important enough to have pleased my mother-in-law.  In fact, she was carrying the genes for vulnerability to colon diseases which might very well have involved her Peyer’s Patches.  Most of what our bodies do is controlled by the autonomic nervous system.  (“Auto”=by itself, uncontrolled consciously, and named for that —“nomic.”)  That’s the system that lie detector instruments are using for reference.

I resist docs who want to add more molecules to a systemic mix in hopes of making it do the right thing.  Bodies will often self-regulate if they remain a moving process.  It’s like regaining one’s balance after stumbling.  Pharmaceutic companies don’t like that idea.  

When I watched the film about Brazilian bull riders, I noticed that when mothers sent their children to bed they said,  “Brush your teeth and wash out your eyes.”  We should probably do that.

Here's another video, this time about the body as poetry.
 http://www.fieldworktv.com/2016/11/24/adam-dickinson-anatomic/