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July 23: World Sjögren's Syndrome Day

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posted on Jul, 23 2014 @ 03:37 PM
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Today is World Sjögren's Syndrome Day. Chances are you may not have heard of this auto-immune disease even though 4 million+ Americans have been diagnosed. There could be more people with Sjögren's but most people are often misdiagnosed or not diagnosed at all.

What is Sjögren's Syndrome?

Sjögren's syndrome is a chronic autoimmune disease in which a person’s white blood cells attack their moisture-producing glands. Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

Nine out of 10 patients are women but men can also have it as well as children.

About half of the time Sjögren’s occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma.

Sjögren’s is a systemic disease, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important — they may prevent serious complications and greatly improve a patient’s quality of life.

Since symptoms of Sjögren’s mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly 4.7 years to receive a diagnosis of Sjögren’s. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.

Since the disease was first identified in 1933 by Dr. Henrik Sjögren, it has been proven to affect virtually every racial and ethnic group. General awareness about Sjögren’s is still lacking and increased professional awareness is needed to help expedite new diagnoses and treatment options.

Currently there is no cure for Sjögren’s Syndrome so people have to rely on other treatments to help.


I was going to link the Sjögren’s Syndrome Foundation website but they ask for donations so I can't link it but you can type it into google and check it out for yourself.

My younger sister was diagnosed at age 5 with Sjögren’s Syndrome (1999) and back then there wasn't a lot of children with Sjögren’s. I've been keeping up on information about the disease and with all my health issues I have it looks like I may also have Sjögren’s Syndrome. I'm hoping to convince the doctor who works with my GP to do a salivary gland biopsy because a blood test on it's own isn't always accurate.




posted on Jul, 23 2014 @ 03:56 PM
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a reply to: knoledgeispower

Any stats on the geographic extent of the symptom set? Somehow these auto-immune malfunctions all seem to catch fire in the West.



posted on Jul, 23 2014 @ 04:03 PM
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Yep .... I've got it. Never heard of it until I was diagnosed with it four years ago. (had the symptoms for a few years before that) I've got the neuropathies that 20% of Sjogrens folks get. And the depression that 80% of us get. Freak'n sucky disease.



posted on Jul, 23 2014 @ 04:40 PM
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originally posted by: InverseLookingGlass
a reply to: knoledgeispower

Any stats on the geographic extent of the symptom set? Somehow these auto-immune malfunctions all seem to catch fire in the West.


Not that I know of. You'd have to do a search on google for that. My family has always lived in Western Canada.
We live in a valley that has a lot of farms & we can't help but think that maybe some of the run off from the farms that gets into the creek that then dumps into our local lakes contributed to the illness. 4-5 of my family has an illness and only one is a non auto-immune disease.



posted on Jul, 23 2014 @ 04:41 PM
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originally posted by: FlyersFan
Yep .... I've got it. Never heard of it until I was diagnosed with it four years ago. (had the symptoms for a few years before that) I've got the neuropathies that 20% of Sjogrens folks get. And the depression that 80% of us get. Freak'n sucky disease.



Yes it is. I was wondering, do you get stones in your salivary glands? My sister gets them in both sides and I have them in both sides (one of the many Sjogren's symptoms I have)



posted on Jul, 23 2014 @ 06:30 PM
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originally posted by: knoledgeispower
do you get stones in your salivary glands?

Not yet. My right submandibular doesn't work at all and if I take certain meds (like Antifungals) it hurts like hell. There may be something in there ... I don't know ... I hope not! Most of my symptoms manifest like M.S. I've been checked for M.S. but they found no lesions. It's been 4 years ... I should go get checked again.

There are so many cross over symptoms with these autoimmune diseases .... it's hard to keep them straight sometimes.



posted on Jul, 23 2014 @ 07:18 PM
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originally posted by: FlyersFan

originally posted by: knoledgeispower
do you get stones in your salivary glands?

Not yet. My right submandibular doesn't work at all and if I take certain meds (like Antifungals) it hurts like hell. There may be something in there ... I don't know ... I hope not! Most of my symptoms manifest like M.S. I've been checked for M.S. but they found no lesions. It's been 4 years ... I should go get checked again.

There are so many cross over symptoms with these autoimmune diseases .... it's hard to keep them straight sometimes.


I pretty much have pain any time I smell something yummy or taste something...basically any time saliva goes through there. A stone was first discovered on my right side and then my left side started acting up. My left side is often way worse than the right. ((Right this very moment the left side hurts bad even though I'm just sitting in my room listening to the rain))

When they went to see if there was a stone the contrast CT scan showed nothing so they had to do an ultrasound. The stone is right beside the nerve that control the movement of my face so it is to risky to try to remove it. I had asked if they could suck it out but you have to be rich enough to fly to Germany & pay for the procedure. It is not something they have in North America because not enough people get stones in their glands.

The Sjogren's Syndrome Foundation site was talking about how symptoms frequently overlap with or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis.



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