Fact of the week: Sjogren's syndrome often accompanies other immune system diseases

Sjogren’s syndrome and other immune-system disorders

Sjogren’s syndrome often accompanies other immune-system disorders, such as rheumatoid arthritis and lupus and hashimoto's thyroid.

We did a small informal survey on facebook asking Sjogren's sufferers if they had other autoimmune conditions as well as Sjogren's. Seventeen women responded. This is what they said:
4 had Hashimoto's thyroiditis, an underactive thyroid condition.
1 had Graves disease, an overactive thyroid condition.
3 had a type of myositis.
4 had Rheumatoid Arthritis RA.
3 had Lupus.
2 had Celiac disease.
1 had Diabetes.
2 had Scleroderma.
1 had Ankolysing Spondylitis AS.
6 had Raynaud's disease.

6 women had 3 or more autoimmune conditions. Some mentioned other conditions that were not immune related diseases.


Thoughts on gluten free and Sjogren's Syndrome

more on gluten free and Sjogren's Syndrome
one-pot roasted salmon, rice and vegetables
Melissa at gluten free for good has great recipes and wisdom if you are following this dietary path. Melissa says "The gluten-free diet is the medical protocol for celiac disease. Why not for all autoimmune diseases? Gluten causes inflammation. Decreasing inflammation via diet and lifestyle should be the first step in reducing the impact of the disease, so it makes sense to eliminate gluten.
Apparently Venus is on a vegan diet to combat her symptoms. There are rumors she’s dabbling in the gluten-free diet as well."

Melissa is author of The Gluten-Free Edge

Do you have Sjögren’s and celiac disease or celiac intolerance?
What do you think? Should people with autoimmune conditions follow a gluten-free diet?
Have you tried a gluten free diet to help your Sjögren’s Syndrome?


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Join in with us for Sjogren's Awareness month this April

Sjogren's Awareness month is April

What can you do to help spread Sjogren's Awareness?
If you are on facebook please join us there for giveaways, games and information about Sjogren's that you can share. There will also be many opportunities for you to share your story.

If you are on PINTEREST maybe you could share some of our blog posts.
If you are on twitter please share some of our posts.
Helping others hear about Sjogren's Syndrome and understand about it is the beginning of community awareness and the first step in getting more research into the disease.


Personal stories about Sjogren's Syndrome

This was posted on the blog and we get so many stories here I thought it would be very worthwhile to share some of them:

I was diagnosed at the age of 2, very uncommon, and I am now 24.
The past couple years I have been developing more problems and discovering different symptoms connected with my SS.
Last year I had a lung biopsy and am now taking an inhaler as needed. I started seeing my Rheumatoid specialist at the age of 14 and it was discovered that I had rheumatoid fluid in all my joints. The fluid has decreased but pain is reoccurring.

The most common symptoms I have are: chronic arthritic pain as well as inflammation in my periodic/salivary glands. I have changed my diet and am now trying to be gluten free. Gluten causes inflammation, which SS can tend to be associated with. I have only been gluten free for a few months, however, I do see a difference in how I feel overall.

I am glad I discovered this blog. I find it interesting reading other's experience with SS since I've never met anyone else with this disorder considering it is very rare at my age.

Celebrities with Sjogren's Syndrome

celebrities with Sjogren's syndrome
Nina Rawls
Nina Rawls, widow of singer Lou Rawls, reveals her fight with Sjogren’s Syndrome.

Nina Rawls has Secondary Sjogren’s Syndrome, meaning it occurs in the presence of another connective tissue autoimmune disease, in her case lupus.
With my finding, I am now an advocate for Sjogren’s syndrome awareness, early diagnosis and treatment. I’m learning that although there is no cure for the syndrome, there are treatments that can greatly improve my troubling symptoms and will prevent further complications,” concludes Rawls. “I’m hoping a greater awareness of the syndrome will push others to be more pro-active in talking with their doctors and dentists about their symptoms and gain potential treatment options.”

From PR Web where you can read the full story.

Read more about Secondary and Primary Sjogren’s Syndrome


Primary Sjögren's syndrome sufferers prone to develop serious complications

I did not like the results of this study and found it quite depressing.
Patients with primary Sjögren's syndrome are prone to develop serious complications over the long term, despite the presumption that this is a relatively benign autoimmune disease, a 25-year review found.
For instance, fully half developed an additional autoimmune disease such as cutaneous lupus, and one in every 10 was diagnosed with non-Hodgkin's lymphoma, according to Esha Abrol, BSc, of University College London.
The study was of only152 patients but they had been studied since 1986. There were other important facts that came out of this study as well:
  • one quarter of the patients had nervous system involvement and peripheral neuropathy
  • 18.5% of patients had died at an average age of 72, which is 10 years earlier than the average life expectancy of a woman un the UK
  • the most common disease was non- Hodgkin's lymphoma
I am not sure what can be done about this except to enjoy life while we have it and have regular check ups by a specialist in Sjogren's Syndrome.

Do you feel that you have a good specialist who understands all this?

Read the full report from Medpage. Maybe we should be printing it out and taking it to our specialists.


Sjogren's Fact of the Week

Experts estimate that more than 4 million people have the disease.  

This makes it the second most common rheumatic disease yet many people have never heard of it. Read more...


What is Primary Sjogren's Syndrome

The symptoms of Sjögren’s Syndrome vary greatly between individuals.
Symptoms include a dryness of the moist areas of the body, like the mouth, eyes, ears, nose and vagina. Fatigue and depression, plus painful joints, are also associated with the disease.

When organs other than the lacrimal and salivary glands are affected, this is known as “extraglandular involvement.” Usually, this occurs in patients with primary Sjögren’s syndrome (see “Primary Versus Secondary Sjögren’s Syndrome”). 

Manifestations of Primary Sjögren’s Syndrome include :
  • joint inflammation
  • particular forms of autoimmune thyroid, kidney, liver, lung, and skin disease
  • changes in nerve function of the upper or lower limbs
  • small proportion of patients may progress to a form of lymphoma
Do you know if you have Primary or Secondary Sjögren’s Syndrome?
Did your specialist define this?

RESOURCE:  National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)


Did you know April is Sjogren's Syndrome month?

I am trying to post more often this month to help increase awareness of Sjogren's Syndrome. I figure it is the first, and basic step, in getting more research into this annoying condition.
Sjögren's Syndrome Foundation is promoting Bold Blue Day.
Do you know of anyone else doing something specially for Sjogren's awareness this month? Please let me know so I can post it here.
Also if you would like to help spread the word please post this on your social networks using the handy little buttons below - Cheers.


Sjogren's fact of the week

Gluten: Wheat, rye & triticale
Biopsy of the small bowel revealed the occurrence of celiac like disease in 15% of Primary Sjogren's Syndrome patients.

Want more information: Institute of Medical Technology, University of Tampere, Finland: Celiac disease and markers of celiac disease latency in patients with
primary Sjögren's syndrome.

Read more about gluten (wheat, rye and triticale) and Sjogren's Syndrome and my personal story here.

Do you have a problem with gluten?

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