Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

April is Sjögren's Awareness Month!

Posted on Sun, Apr 01, 2018

30 Faces for Sjögren's Awareness Month!

With an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

Apriil SSF 2017

April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.  Every day in April, we will be using one or more of our social media channels to educate people about Sjögren’s.

We encourage you to use April Awareness Month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you!

Get Involved!

On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we are transforming the future of Sjögren's for all patients!

Click here to view our daily  April Awareness campaign on Facebook!
 

 this is sjogrens - 2018

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

30 Faces for Sjögren’s Awareness Month 

Posted on Fri, Mar 16, 2018

AprilisSjogrensAwarenessMonth.jpg

30 Faces for Sjögren’s Awareness Month

#ThisIsSjögrens
 

With an estimated 4 million Americans living with Sjögren’s, it is one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

April is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex and debilitating disease. With our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease. Using the #ThisIsSjögrens hashtag, the SSF will highlight 30 people’s photos, along with a fact about how the disease affects his/her life.

Every day in April, the Foundation will post a different photo of someone who is living with Sjögren's or touched by the disease (you can be a patient, family member, friend, physician, researcher etc.). Along with the photo, we will include one fact from their #ThisIsSjögrens Questionnaire on our social media pages.

The 30 daily posts will each give one small glimpse into the disease, and by the end of April, we hope the collection of posts will show the seriousness and complexity of Sjögren’s.

Let Your Voice Be Heard!

SSF This Is Sjogren's.png

If you would like to submit your story as one of our “30 Faces for April Awareness Campaign” please email us your answers from the questionnaire below, and a picture of yourself, to tms@sjogrens.org with the subject line: “April Awareness Month 2018.”

Thank you for your support. Together we will make Sjögren’s a household name!


#ThisIsSjögrens Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) 

Name (The Foundation will only publish first names):

Email: 

Current age: 

Age when diagnosed (or What is your connection to the disease):

City/State:

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): 

What are your top three most difficult symptoms to live with:

What do you wish people knew about your Sjögren’s: 

What’s your best Sjögren’s tip: 

Don’t forget to include a picture of yourself!

 

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

Valentine's Day Giveaway!

Posted on Wed, Feb 14, 2018

*****
Congratulations to our 2018 SSF Valentine's Day Giveaway Winners! The winners are Natalie K., 
Nancy D., and Sherri W. The Foundation has privately emailed the three winners.

Thank you to everyone who supported the SSF by participating in our giveaway! 
*****

 

Happy-Valentines-Day fancy-1.jpg

To celebrate the season of love this Valentine's Day, the SSF wants to Sjö how much we appreciate you by giving away three complimentary registrations to the 2018 SSF National Patient Conference! 

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2018. The Foundation will privately email the three winners on Tuesday, February 20, 2018. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions. 

2018 National Patient Conference 
April 13-14, 2018
Hyatt Regency Aurora- Denver Conference Center
13200 East 14th Place Aurora, Colorado 

Presentation topics will include: 

• Sjögren’s Overview
• Joint Pain and Sjögren’s
• Oral Manifestations of Sjögren’s
• Lymphoma: Risk, Treatment and Prognosis
• Ocular Manifestations of Sjögren’s
• Transforming the Future of Sjögren’s Panel 
• 
And More To Be Announced

Click Here to View the 2018 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: National Patient Conference, Sjögren’s

New Sjögren’s Clinical Trial Locations

Posted on Thu, Jan 18, 2018

Steven_Town_Hall.pngEveryday research is being conducted to unveil new medications, therapies and diagnostic tools for Sjögren’s and its symptoms.  By participating in a clinical trial, you will be helping to potentially uncover breakthroughs that will help Sjögren’s patients worldwide. 

Clinical trials are designed to add to medical knowledge and most importantly, the results of these trials can make a difference in the care and treatment of Sjögren’s patients for generations to come. New clinical trials are investigating possible future treatment options and the SSF is fully committed to the development of new therapeutics that will treat the entire disease, not just one symptom.

These Sjögren’s trials are starting to actively recruit patients and sites open all the time. I encourage you to click on the link below to visit our listing of clinical trial locations and contact the clinical trial study coordinator to learn more.

Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Click here to learn more about  current Sjögren’s clinical trials! 

Topics: Treatment, Clinical Trials, Sjögren’s

The Pros & Cons of using Fluoride for a Sjögren’s patient

Posted on Fri, Jan 05, 2018

“The recent SSF Clinical Practice Guidelines for Caries Prevention mentioned fluoride treatment but I’ve heard it’s a neurotoxin and can have negative health effects. What are the pros and cons of using fluoride as a patient?”

avaWuDDS.jpgThere are nuances to the statement that “fluoride is a neurotoxin,” which should be clarified. The statement should read, “fluoride is possibly a neurotoxin in the developing brain.” This statement is based on statistical studies using children living in non-industrialized areas with drinking water containing naturally occurring very, very, very high levels of fluoride. In fact, the fluoride levels were up to 10 to 16 times that which is allowed in drinking water in the United States. These studies suggested that the lower IQ’s found in these children were the result of neurotoxicity in the developing brain from ingesting high levels of fluoride. The average loss of IQ was approximately 6.75 points with a standard deviation of 15 points. Thus the average loss of IQ was actually within the measurement of error of IQ testing. It was generally acknowledged that each of these studies had deciencies including not mentioning if there were other contaminants in the ingested water (i.e., lead, arsenic, iodine, or other chemicals), which could also affect the developing brain. It is important to remember that most ingested substances can be TOXIC if ingested in excessive quantities over a specified amount of time.

My statistics professor would also stress, “correlation does not imply causation.” Just because drinking water with very high fluoride levels is correlated with a drop in IQ, it does not mean that drinking the heavily fluoridated water actually caused the shift in IQ and thus neurotoxicity. There are many examples, but consider the case of hormone replacement therapy (HRT) being shown to be correlated with a decrease in coronary artery disease (CAD). Further trials showed that HRT actually increased CAD! Reanalysis of the data suggested that it was actually a healthier diet and lifestyle that was reducing the CAD, not HRT. Whether fluoride actually causes neurotoxicity as measured by IQ has not been well defined.

It is important to note that the Sjögren’s Syndrome Foundation (SSF) recommendation for caries prevention suggests the use of a topical fluoride. A topical application of fluoride results in little to no measurable fluoride in the blood. The fluoride is not directly ingested. Consequently, it would not be possible for a topical fluoride, applied as directed, to result in consistently high levels of fluoride within the body to cause toxicity. In addition, the majority of Sjögren’s individuals are considered to have mature brains. That means they are not susceptible to any potentially neurotoxic effects resulting in a loss of IQ points. There are no cons to the use of topical fluoride in an individual who is highly susceptible to caries because of low salivary flow. The pro to the use of topical fluoride is that it can inhibit and even reverse the dental caries process. Fluoride works. And this statement is supported by close to a century of research and scrutiny.

by Ava Wu, DDS School of Dentistry Clinical Professor, University of California San Francis

Click here to view the SSF Clinical Practice Guidelines for Oral Management in Sjögren’s

This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Tooth Decay, Clinical Practice Guidelines, Sjögren’s, Floride

Sjögren’s & Kidney Disease

Posted on Wed, Nov 29, 2017

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

SSF TMS.pngAbout 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members.

 Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

 

Topics: Symptoms, Treatment, Immunosuppressant, #ThisIsSjögrens, Kidney Disease, Urine, Sjögren’s

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