Sjögren's Syndrome Foundation

Sjögren's Syndrome Foundation Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Visit us at www.sjogrens.org.
The Sjögren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's.

#TipTuesday: If you have lupus or Sjögren’s & have had gastric bypass surgery, make sure to ask your rheumatologist to c...
06/25/2019
Lupus Encyclopedia: Book about SLE, fibromyalgia, Sjögren’s, arthritis etc

#TipTuesday: If you have lupus or Sjögren’s & have had gastric bypass surgery, make sure to ask your rheumatologist to check your hydroxychloroquine drug level to see if you need a higher dose.

Today’s tip is from Dr. Donald E. Thomas, a member of the SSF volunteer Board of Directors. Dr. Thomas recently spoke at the SSF 2019 National Patient Conference on “Fatigue & Sjögren’s.” Click on the link below to learn more about his presentation. https://www.sjogrens.org/ssfstore/audio-downloads/audiofatigueandsjogrens2019-detail

We encourage you to share this on your page and comment below about your own experience(s).

If you have #lupus or #Sjogrens and have had gastric bypass surgery: Make sure to ask your rheumatologist to check your hydroxychloroquine drug level to see if you need a higher dose:

https://lupus.bmj.com/content/6/1/e000335

My patients had low levels, most likely due to malabsorption (study published in Lupus Science and Medicine) ... they did much better after I increased their doses. The ability to check drug levels is helping us to be more precise in managing our patients better.

SHARE with everyone with lupus or Sjogren's syndrome

by Don Thomas, MD
facebook.com/LupusEncyclopedia
lupusencyclopedia.com
[email protected]

Photo credit: LA Bariatrics

Last week, Kathy Hammitt, SSF VP of Medical & Scientific Affairs, attended the annual joint meeting IADR/AADR/CADR in Va...
06/24/2019

Last week, Kathy Hammitt, SSF VP of Medical & Scientific Affairs, attended the annual joint meeting IADR/AADR/CADR in Vancouver, Canada. During the meeting, Hammitt co-chaired a symposium entitled, “Future Promise and Critical Research Needs in Special Care Communities.”

The symposium panel discussed current research/research needs and Hammitt spoke on “The Patient Voice.” Hammitt talked about the importance of clinical researchers to interact with patient organizations to better understand their specific needs because it is research that provides hope to patients living with these complex and debilitating diseases like Sjögren’s. Hammitt focused on the role oral health as an integral part of overall and systemic health, and the importance of collaboration in oral medicine with other specialists.

Photo caption from symposium (L to R): Razzaque Ahmed, MD, DSc; Athena Papas, DMD, PhD; Tim Wright, DDS, MS; Kathy Hammitt, MA, SSF VP of Medical & Scientific Affairs; Martha Somerman, DDS, PhD, Director, NIDCR, NIH
Special thank you to Dr. Somerman who co-chaired the symposium and moderated the session.

Learn more about this meeting in “The Moistures Seekers,” SSF’s patient newsletter for members.
#IADR2019
https://www.sjogrens.org/home/get-connected/become-a-member

06/21/2019
Sjögren's Syndrome Foundation

We hope everyone from the Dallas, TX area will join us tomorrow Saturday, June 22, for the Dallas Walk for Sjögren's & Autoimmune Disease Health Fair! Click on the following link to learn more about this family-fun event!

http://events.sjogrens.org/site/TR?fr_id=1313&pg=entry

The SSF also has upcoming events in L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].

https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

We hope everyone from the Dallas, TX area will join us on Saturday, June 22, for the upcoming Walk for Sjögren's! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1313&pg=entry

The SSF also has upcoming events in L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].

https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

Did you miss the SSF 2019 National Patient Conference? Get all the vital information you need in an audio format! 7 of o...
06/19/2019
Sjögren's Syndrome Foundation - Welcome to SSF

Did you miss the SSF 2019 National Patient Conference? Get all the vital information you need in an audio format! 7 of our most popular talks are available for purchase on an audio CD or downloadable format.

These audio presentations are an excellent way to have a permanent resource with some of the most vital information available to Sjögren's patients. Purchase just the talks you want to hear or purchase the whole set!

Click on the link below to order one of our available 2019 talks or you can order by calling our office (301) 530-4420.

Your credible Sjögren's syndrome resource.

#TipTuesday: Scientific data shows that longevity is associated with the successful management of a chronic diseases, no...
06/18/2019
15 Types of Sjögren’s Fatigue

#TipTuesday: Scientific data shows that longevity is associated with the successful management of a chronic diseases, not the absence of one. Remember that Sjögren’s is not a cookie cutter disease and one coping technique/treatment plan will not work for every patient. Finding what works for YOU is a difficult but important process.

We encourage you to share this on your page and comment below about your own experience(s).

For me, Sjögren’s fatigue has been a problem more disabling than dry eyes or dry mouth. I long for normal energy and the ability to sustain activity, any activity. I long for the kind of fatigue that gets better with a good night's sleep. I want to be able to do things spontaneously.

Steven Taylor, SSF CEO, is ensuring that the voice of Sjögren’s patients is heard worldwide among rheumatologists & indu...
06/15/2019

Steven Taylor, SSF CEO, is ensuring that the voice of Sjögren’s patients is heard worldwide among rheumatologists & industry at the European League Against Rheumatism (EULAR). Today he co-presented a research poster on “Characteristics and Treatments of Patients with Sjögren’s in Real-World Setting,” at the EULAR Congress in Madrid, Spain. #EULAR2019

06/13/2019
Sjögren's Syndrome Foundation

We hope everyone from the Dallas, TX area will join us Saturday, June 22, for the Dallas Walk for Sjögren's & Autoimmune Disease Health Fair! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1313&pg=entry

The SSF also has upcoming events in L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].
https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

We hope everyone from the Dallas, TX area will join us on Saturday, June 22, for the upcoming Walk for Sjögren's! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1313&pg=entry

The SSF also has upcoming events in L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].

https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

View the SSF’s most recent blog post, “A Caregiver Reflection”We encourage you to share this on your page & comment belo...
06/12/2019
A Caregiver's Reflection

View the SSF’s most recent blog post, “A Caregiver Reflection”

We encourage you to share this on your page & comment below about your own experience(s).

Today is not terribly different from any other day. The day begins... slowly. Introducing a reference to time...not recommended.

#TipTuesday: To reduce the risk of tooth decay from dry mouth with Sjögren’s, consider chewing a piece of sugar free xyl...
06/11/2019
Conquering Sjogren's | Xylitol

#TipTuesday: To reduce the risk of tooth decay from dry mouth with Sjögren’s, consider chewing a piece of sugar free xylitol gum after every meal or snack.

We encourage you to share this on your page & comment below about your own experience(s) with this tip.

Xylitol | The blog of the Sjogren's Syndrome Foundation covering all aspects of Sjogren's and its symptoms.

06/10/2019
Dallas Walk for Sjögren's & Autoimmune Disease Health Fair

We hope everyone from the Dallas, TX area will join us on Saturday, June 22, for the upcoming Walk for Sjögren's! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1313&pg=entry

The SSF also has upcoming events in L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].

https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

We hope everyone from the Denver area will join us this Saturday, June 8, for the upcoming Walk for Sjögren's! Click on ...
06/06/2019
2019 Denver Walk for Sjögren's

We hope everyone from the Denver area will join us this Saturday, June 8, for the upcoming Walk for Sjögren's! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1312&pg=entry

The SSF also has upcoming events in Dallas, L.A., Austin & Philadelphia! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected].
https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

Denver Walk for Sjögren's

#TipTuesday: Since many Sjögren’s patients take dietary supplements to aid in the management of their disease, we encour...
06/04/2019
NIH Hosts Dietary Supplement Database

#TipTuesday: Since many Sjögren’s patients take dietary supplements to aid in the management of their disease, we encourage you to visit the NIH Dietary Supplement Label Database (DSLD) as a useful tool. The DSLD allows you to search products, brands & ingredients.

For example, if a patient is taking fish oil & vitamin D, this can be helpful because they could find a combination supplement rather than two separate supplements. This can result in easier maintenance of supplements & be a more cost effectiveness option. And remember, just because an over-the-counter product is natural that does not make it safe or appropriate. The SSF recommends that you should always discuss natural remedies with your doctor.

We encourage you to share this on your page & comment below about your own experience(s) with this tip.

Did you know that the National Institutes of Health has a database that allows individuals to search the labels of dietary supplements?

Watch the Exploring Sjögren's season one finale: Clinical Trials & Sjögren's.In a recent survey, over 96% of patients wa...
06/03/2019
Episode 6 - Clinical Trials and Sjögren's

Watch the Exploring Sjögren's season one finale: Clinical Trials & Sjögren's.

In a recent survey, over 96% of patients want a treatment for Sjögren’s that will cover the entire disease. As a result, SSF has put together a Clinical Trial Consortium that brings together leading Sjögren’s healthcare professionals and pharmaceutical companies to work together in developing new therapeutic treatments. The final episode of season one shares the progress that has been made and the challenges ahead.

We encourage you to share this on your page & thank you for watching season one of our new YouTube series.

In a recent survey, over 96% of patients want a treatment for Sjögren’s that will cover the entire disease. As a result, the Sjögren’s Syndrome Foundation ha...

The Exploring Sjögren's season 1 finale is airing this Monday. Exploring Sjögren’s, the SSF's new YouTube video series, ...
06/02/2019
Exploring Sjögren’s

The Exploring Sjögren's season 1 finale is airing this Monday. Exploring Sjögren’s, the SSF's new YouTube video series, explores Sjögren’s and the daily lives of our patients. Catch up on all episodes in our series premiere now!

We encourage you to share this on your page & subscribe to our channel to see more episodes as they air.

https://info.sjogrens.org/conquering-sjogrens/exploring-sjögrens

Exploring Sjögren’s is our new YouTube video series that explores Sjögren’s and the daily lives of our patients.

The Exploring Sjögren's season 1 finale is airing this Monday. Exploring Sjögren’s, the SSF's new YouTube video series, ...
05/31/2019
Exploring Sjögren’s

The Exploring Sjögren's season 1 finale is airing this Monday. Exploring Sjögren’s, the SSF's new YouTube video series, explores Sjögren’s and the daily lives of our patients. Catch up on all episodes in our series premiere now!

We encourage you to share this on your page & subscribe to our channel to see more episodes as they air.

Exploring Sjögren’s is our new YouTube video series that explores Sjögren’s and the daily lives of our patients.

05/30/2019
Denver Walk for Sjögren's - Saturday, June 8, 2019

We hope everyone from the Denver area will join us on Saturday, June 8, for the upcoming Walk for Sjögren's! Click on the following link to learn more about this family-fun event!
http://events.sjogrens.org/site/TR?fr_id=1312&pg=entry

The SSF also has an upcoming event in Dallas! If you would like to get involved in a Foundation event or you would like to learn about starting one, please click on the link below or contact Jessica at [email protected]. https://www.facebook.com/pg/SjogrensSyndromeFoundation/events

#TipTuesday: Being diagnosed with Sjögren’s can be daunting. From the symptoms & complications to the emotional & financ...
05/28/2019
Episode 5 - Tips For Living with Sjögren's

#TipTuesday: Being diagnosed with Sjögren’s can be daunting. From the symptoms & complications to the emotional & financial burdens, the disease can be all encompassing. Staying positive when faced with the diversity of Sjögren’s can be a challenge but knowledge & a good support system is key. Remember, the SSF is there as the first link in your support network chain. We are here for you!

We encourage you to share this on your page & comment below about your own experience(s) with this tip.

Living with Sjögren’s can be a challenge every day. Most patients have to adjust to a “new normal” of functioning while battling this autoimmune disease. Eac...

Exploring Sjögren’s Episode 5 - Living with Sjögren’s can be a challenge every day. Most patients have to adjust to a “n...
05/27/2019
Episode 5 - Tips For Living with Sjögren's

Exploring Sjögren’s Episode 5 - Living with Sjögren’s can be a challenge every day. Most patients have to adjust to a “new normal” of functioning while battling this autoimmune disease. Each patient must find his or her own journey and tools for living with this insidious disease. This #ExploringSjögrens episode highlights current patients and their advice for how to adjust and live with Sjögren’s.

We encourage you to share this on your page & subscribe to our channel to see more episodes as they premiere. The final episode of season 1 will air next Monday at 12pm EST.

https://youtu.be/L5bcxm5Tbt8

Living with Sjögren’s can be a challenge every day. Most patients have to adjust to a “new normal” of functioning while battling this autoimmune disease. Eac...

Sjögren’s Research - The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researc...
05/26/2019
Episode 4 – Research and Sjögren’s

Sjögren’s Research - The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researchers around the world focusing on Sjögren’s, there is a large array of work being done to help understand the disease. This #ExploringSjögrens episode looks at the current research being done in Sjögren’s.

We encourage you to share this on your page & subscribe to our channel to see more episodes as they premiere. Episode 5, will air next Monday at 12pm EST.

https://youtu.be/A-zYdOR4R7k

The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researchers around the world focusing on Sjögren’s, there is a la...

05/23/2019

Thank you to all our Facebook friends & fundraisers! Not only have you helped raise vital funds to help with SSF research, advocacy & patient support initiatives, but you have increased awareness of this of this often-misunderstood disease. 100% of all donations made on Facebook go directly to the Foundation & helping our mission. Together, we will conquer the complexities of Sjögren’s.

We encourage you to share this on your page & comment below about why supporting the SSF is important to you.

#TipTuesday: Remember to pay as much attention to your mental health as you do your physical health. The mind-body conne...
05/21/2019
Living with Chronic Pain

#TipTuesday: Remember to pay as much attention to your mental health as you do your physical health. The mind-body connection is real and plays a major role in combating any illness.

We encourage you to share this on your page & comment below about your own experience(s) with this tip.

This tip was taken from “Living with Chronic Pain” by Darlene Cross, MS, MFT, which was first printed in “The Moisture Seekers," SSF's patient newsletter for members.

Living with Chronic Pain by the Sjogren's Syndrome Foundation.

Today's World AiArthritis Day! This is an annual event to "drive" global awareness about AiArthritis diseases. Sjögren’s...
05/20/2019
Exploring Sjögren’s

Today's World AiArthritis Day! This is an annual event to "drive" global awareness about AiArthritis diseases.

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.

We encourage you to share this on your page to help raise awareness of Sjögren's.
International Foundation for Autoimmune & Autoinflammatory Arthritis

Welcome to the Exploring Sjögren’s YouTube channel, hosted by the Sjögren’s Syndrome Foundation (SSF)! The episodes featured, start to explore the daily live...

Sjögren’s Research - The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researc...
05/20/2019
Episode 4 – Research and Sjögren’s

Sjögren’s Research - The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researchers around the world focusing on Sjögren’s, there is a large array of work being done to help understand the disease. This #ExploringSjögrens episode looks at the current research being done in Sjögren’s.

We encourage you to share this on your page & subscribe to our channel to see more episodes as they premiere. Episode 5, will air next Monday at 12pm EST.

https://youtu.be/A-zYdOR4R7k

The complexity of Sjögren’s allow many opportunities to study the disease. With hundreds of researchers around the world focusing on Sjögren’s, there is a la...

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10701 Parkridge Blvd., Suite 170
Reston, VA
20191

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Follow us on twitter: @SjogrensOrg https://twitter.com/SjogrensOrg Learn about becoming a member: http://info.sjogrens.org/become-a-member/?&t=64179#2475263_NewModuleAnchor

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