Thursday

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.

Wednesday

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...

Saturday

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)

Sunday

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.

Tuesday

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?

Sunday

What affects your dryness in Sjogren's?

sugar and health concerns
Have you noticed a problem with sugar and your health?
I have found a few things that increase my Sjogren's dryness in my mouth. Obviously salt and soy sauce and take away foods that are full of salt but also tea. Yes plain ordinary tea. I drink it with skim milk and almost 1 sugar. Whenever I have a cup of tea my tongue gets sore afterwards, almost as if the tea has burnt it but I am not drinking it very hot.
Now I have found something that actually decreases my mouth dryness! SUGAR. I don't mean eating sugar, I mean removing sugar from my diet. The added bonus is when I don't use sugar I don't enjoy tea so it kills two birds with one stone. The dehydrating effect of tea is gone and the sugar is gone too.
If you are interested in quitting sugar I have found a great book called The 21 Day Sugar Detox which gives a step-by-step program, recipes, guidance including daily emails and an online community. Click Here! if you want to find out more.

Tuesday

Do I have Primary or Secondary Sjogren's Syndrome?

Primary Versus Secondary Sjögren’s Syndrome

Sjögren’s syndrome is classified as either primary or secondary.
Both are systemic diseases, meaning they can affect many systems in the body, and they occur with about equal frequency.

The primary form causes early and gradually progressive decreased function in the lacrimal and salivary glands, and can include a variety of extraglandular conditions.

The secondary form occurs in people who already have another autoimmune connective tissue disease, most commonly rheumatoid arthritis or systemic lupus erythematosus. These people then develop dry eyes or dry mouth.

Some people with Sjögren’s syndrome have certain autoantibodies circulating in their blood called “anti-SS-A” and “anti-SS-B.” They are strongly but not exclusively associated with Sjögren’s syndrome. Other people with clear evidence of primary Sjögren’s syndrome do not have those antibodies.

Although people with secondary Sjögren’s syndrome generally have less severe ocular and oral problems than those with the primary form, they also have to contend with the effects of their primary disease (i.e., rheumatoid arthritis, systemic lupus erythematosus, etc.).

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

Sunday

Why You Should Be Drinking Green Tea with Sjogren's Syndrome



GREEN TEA may prevent or slow down  autoimmune diseases.  It is a natural treatment being studied by Dr. Stephen Hsu, a researcher in the Medical College of Georgia, USA.  A component of green tea called EGCG helps suppress inflammation, according to Dr. Hsu and hi colleagues.

Dr. Hsu's study, at the Medical College of Georgia, USA,  found much less damage in the salivary glands in the group treated with green tea extract. About 30% of elderly Americans suffer from degrees of dry mouth, while only 5% of the elderly in China, where green tea is widely consumed, suffer from the problem.
Dr. Hsu says “EGCG...significantly lowered the serum autoantibodies, reducing the severity of Sjögren’s Syndrome-like symptoms.”
EGCG is Green Tea catechin.

"The benefit of using green tea in preventing or slowing these autoimmune diseases is that it's natural and not known to harm the body," says Dr. Kevin Gillespie, first author of the study.

More Reasons Why You Should Be Drinking Green Tea – for Type 1 Diabetes & Sjogren’s Syndrome.
 
I am trying to quit ordinary tea (AGAIN) and drink green tea. I am hoping it reduces the common symptom known as dry mouth.
How about you? What do you drink? Black, green, both or none?

Tuesday

New gum for dry mouth in Sjogren's Syndrome

A worrying symptom of Sjogren's Syndrome is dryness of the mouth, which can lead to dental problems and a cough. A chewing gum called MighTeaFlow is now available for dry mouth.
 
  • Helps reduce bacteria that flourish in a dry mouth, causing plaque and tooth decay
  • Helps relieve mouth dryness without side effects with all the benefits of green tea and Xylitol
  • Naturally stimulates salivary flow.

Xylitol helps prevent dental decay and stimulates saliva.
Jaborandi leaf extract is a herb that has been used in South American countries for centuries to increase secretion. 
Developed by Dr. Stephen Hsu, a professor at Georgia Health Sciences University, College of Dental Medicine.
It is made in the USA at FDA-Approved Manufacturing Facilities – U.S. Patent Technology. I have not seen this product in Australia yet. Is anyone using this gum and what do you think of it?
The only place I can find to purchase it is here.

gum for dry mouth

DISCLAIMER: I am not affiliated with this product in any way and do not get paid when you purchase their product.


Saturday

Protecting your eyes with Sjogren's syndrome


I can't go out of the house anymore without my eyes being so aggrevated the rims turn red and I look like I've been crying. I wear multifocals normally and here begins the dilemma.  What to wear to protect my eyes from glare? Only another person who wears multifocals will understand.
If I use normal sunglasses I am as blind as a bat.
I bought some clip ons and lost them and they may also scratch the lens of the multifocals. (Also my daughter tells me they are not cool!)
Apparently you can get wrap arounds that fit around the top of other glasses but they are expensive and block your vision. So the dilemma continues!
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