I’m often asked “So what exactly do you have?”
That’s a good question! And if you figure out the answer to it, please fill me in!
There are over 80 autoimmune diseases – and that number is increasing as more are discovered. The problem is that so very little is known about them! They’re complex, can involve every organ in the body and the signs and symptoms of them can mimic so many other diseases (both auto-immune and non) that diagnosing them sometimes feels like throwing a dart at a dartboard.
The various diseases can all have the same lab work and the same symptoms. Fatigue, joint pain, and bloodworm with high rheumatoid factor and sed rate could be a set of manifestations of every single one of those 80+ autoimmune diseases.
I’ll talk more about my journey through various diagnosis later, but for now I can share with you the one diagnosis that the doctors and I are pretty darn positive about (as opposed to the other two that I may or may not have that overlap the one that we know about).
The disease that is my only currently confirmed diagnosis is Sjogren’s Syndrom (pronounced SHOW-grins). I know…you’re thinking “What is that? I’ve never heard of that!” So let me introduce you!
Our immune systems are what keep us healthy – they attack things in the body that aren’t supposed to be there and that may be trying to do us harm (such as germs). However in some people (and they have no clear idea why or how), the immune system begins to attach things that should be there and that are not only not trying to harm us but are necessary to our well-being! (Hence the name of this blog “As my body attacks itself.”)
How many people have Sjogren’s?
Approximately 4 million Americans are living with Sjogren’s today. That’s about 1.3% of the population. This is approximately 1.5 times the number of survivors and current breast cancer patients combined. (Please note that I’m in no way comparing the two diseases in any way except in prevalence – I’m not comparing their severity or how bad they are. I simply think it helps put the number of people with Sjogren’s in perspective if it’s compared to the number of people with something else that we’re more familiar with).
9 out of 10 of the people with Sjogren’s are women. Yay, us!
About half of the people that have it are diagnosed with “Primary Sjogren’s,” meaning it’s the primary diagnosis. The other half have “Secondary Sjogren’s” meaning that the patient has it along with another auto-immune disease such as Rheumatoid Arthritis or Lupus.
What is Sjogren’s?
Auto-immune diseases are differentiated by what exactly they attack in our body that they shouldn’t be attacking. Sjogren’s is when the white-blood cells in the body attack the moisture-producing glands. The two primary are saliva and tears.
So at this point you’re probably thinking something along the lines of “so just use eye drops and drink water to replace the tears and saliva you’re missing.” That’s what I thought, too. I first heard about this disease and wrote it off as something “minor” compared to whatever is causing all of these other problems in my body.
See, I wasn’t diagnosed with Sjogren’s until almost 2 years into this journey. The first two years were spent with the diagnosis of Rheumatoid Arthritis (more about the history of my musical diagnosis on another day). So when my doctor added in this diagnosis I thought “big deal – low tears and spit. That’s minor compared to the pain and possible damage to other parts of my body.”
At least that’s how I thought about it until I found out all the other lovely things about Sjogren’s syndrome.
What else can Sjogren’s do?
Sjogren’s can also affect the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and central nervous system. All cases of Sjogren’s are systemic – the affect the entire body! Sjogren’s patients also have an increased rate of lymphoma. Ummm…OK, so this is more serious than “just throw in some artificial tears and drink some water when you eat.”
Symptoms include “extreme fatigue and joint pain” (from www.sjogrens.org) – remember…basically ALL auto-immune diseases can show themselves this way. The symptoms can remain constant, get worse or go into remission (although that’s rare…dang it!) People experience it differently – from mild discomfort to debilitating symptoms. Oh, boy, what fun!
How is Sjogren’s diagnosed?
The problem is that, like I mentioned before, auto-immune diseases mimic each other. That, combined with the fact that not only is general population awareness for this disease low but even professional awareness is not where it should be, means that it takes an average of 4.7 years to receive a diagnosis of Sjogren’s. I guess I should consider myself lucky that it was right at 2 years for me!
There are two antibodies that can show up in blood work (SS-A and SS-B) that are fairly specific for Sjogren’s (SS-B is even more specific than SS-A). However I wasn’t even tested for those antibodies until the doctor suspected the disease almost 2 years in. And that only happened when I switched doctors – who knows if or when my original rheumatologist would have tested me…or even proposed the idea that I might have this disease! And you guessed it – I have both!
It can also be diagnosed with a variety of tests on the eyes to see how dry they are and how you produce tears. I pretty much flunked those tests…and in fact flunked so poorly that I was told I couldn’t wear contacts…likely forever. More on that another day, too.
So if I have primary Sjogren’s (meaning that I have no other auto-immune diseases and this one is causing all of my signs and symptoms), then I have a more severe case – dry eyes, mouth, extreme fatigue, worsening joint pain. And that puts me in a category that is a “much greater” chance of lymphoma than those with less severe manifestations.
But maybe I have other auto-immune disorder overlaps (still waiting on various tests from a third doctor) – and if I have an overlap then who knows which disease is causing which portion of symptoms.