Sjögren's Foundation

Sjögren's 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.
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Understanding Sjögren’s: “SHOW-grins” is a systemic autoimmune disease that affects the entire body. Along with symptoms...
08/07/2020

Understanding 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 & comment below about your own experience(s).
https://www.sjogrens.org/understanding-sjogrens

Come visit us at our virtual resource booth today! Join Sjögren's Foundation CEO, Steven Taylor, and more than 40 other ...
08/06/2020

Come visit us at our virtual resource booth today! Join Sjögren's Foundation CEO, Steven Taylor, and more than 40 other patient advocacy groups at today's free Virtual Resource Fair. By attending, you will be able to connect with your peers, hear from experts and access resources about Sjögren’s.

Register and join us now: www.covidadvocacyexchange.com. We also encourage you to share this on your page and invite others to learn more about Sjögren’s.

Tomorrow, we hope you will join the Sjögren’s Foundation, our CEO Steven Taylor, and more than 40 other patient advocacy...
08/05/2020

Tomorrow, we hope you will join the Sjögren’s Foundation, our CEO Steven Taylor, and more than 40 other patient advocacy groups for a Virtual Resource Fair. By attending, you will be able to connect with your peers, hear from experts and access resources about Sjögren’s.

Register now for this free event at www.covidadvocacyexchange.com.

On Thursday, August 6, we hope you will join the Sjögren’s Foundation, our CEO Steven Taylor, and more than 40 other pat...
08/04/2020

On Thursday, August 6, we hope you will join the Sjögren’s Foundation, our CEO Steven Taylor, and more than 40 other patient advocacy groups for a Virtual Resource Fair. By attending, you will be able to live chat with advocacy representatives, access resources at virtual exhibit booths and connect with other patients like you.

Register now for this free event at www.covidadvocacyexchange.com.

#TipTuesday: Today, we want to hear from you! As we continue to navigate these unprecedented times, your health and well...
08/04/2020

#TipTuesday: Today, we want to hear from you! As we continue to navigate these unprecedented times, your health and wellbeing remains the Foundation’s main priority. The best tips often come from patients and we want to know what’s your best tip for managing Sjögren’s and staying well both physically and mentally?

We encourage you to share this on your page and comment below with your best tip(s). For more information about how to stay well during these unsettling times, view the Foundation’s free town hall calls here: https://www.sjogrens.org/living-with-sjogrens/town-halls

Thank you, Carrie Ann Inaba, for continuing to raise awareness about the complexity of Sjögren’s. Sjögren’s is not a coo...
07/28/2020
Carrie Ann Inaba doesn’t let Sjögren’s syndrome stand in her way | NIH MedlinePlus Magazine

Thank you, Carrie Ann Inaba, for continuing to raise awareness about the complexity of Sjögren’s. Sjögren’s is not a cookie cutter disease and affects all patients differently. Thank you for sharing your experience and talking about the good and bad days that come with this disease. Together we will conquer the complexities of Sjögren’s.

We encourage you to share this on your page and comment about your own experience(s) living with the Sjögren’s.

Carrie Ann Inaba on life with Sjögren's syndrome and other autoimmune diseases.

#TipTuesday: Scan documents anywhere with your iPhone using the “Notes” App. To scan a document, first open the Notes Ap...
07/28/2020

#TipTuesday: Scan documents anywhere with your iPhone using the “Notes” App. To scan a document, first open the Notes App, then use the camera/ + icon to scan what you need, rename it and save or email it as a PDF.

With people working from home now more than ever, we hope you find this tip helpful. We encourage you to share this on your page and comment below with your best tip.

Today is World Sjögren's Day! Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Al...
07/23/2020

Today is World Sjögren's Day!

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 show your support for all patients or make a donation to support Sjögren’s research.

Click here to make a donation: https://www.facebook.com/donate/2988514614711625/3201063716598370/?fundraiser_source=feed&source_data[post_id]=3201063716598370

Tomorrow is World Sjögren's Day!  Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body...
07/22/2020

Tomorrow is World Sjögren's Day!

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 this complex disease & show your support for all patients.
www.sjogrens.org

07/21/2020

Update your Facebook picture to support World Sjögren's Day!

On July 23rd, the Sjögren's Foundation invites you to participate in World Sjögren's Day - the perfect opportunity for people to raise awareness about this complex disease.

World Sjögren's Day was established by the Foundation more than a decade ago and is the birthday of Dr. Henrik Sjögren (the Swedish ophthalmologist who first identified the disease in 1933). Dr. Sjögren met a patient who complained of dry eye, dry mouth and joint pain. While each of these symptoms were already well known, it was the combination of them that Dr. Sjögren noticed and decided to investigate.

Dr. Sjögren could have been just an ophthalmologist who happened to meet a patient with dry eye, but his open mind led him to the discovery of an unknown clinical entity. His work not only paved the way for current researchers in the field but has also helped all patients living with the disease.

In addition to honoring Dr. Sjögren, World Sjögren’s Day gives everyone touched by the disease a vehicle to reach out and educate those close to you about Sjögren’s. It is the ideal opportunity for you to have your voice heard and share your story.

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.
www.sjogrens.org
www.facebook.com/profilepicframes/?selected_overlay_id=204204457674732

#TipTuesday: “If you know someone with Sjögren's, please support that person with all of your heart & patience. It will ...
07/21/2020

#TipTuesday: “If you know someone with Sjögren's, please support that person with all of your heart & patience. It will make all of the difference in the world!” -Abby, patient

In honor of World Sjögren's Day, July 23, we encourage you to share this on your page to help raise awareness of this complex disease & show your support for all patients.

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.
https://www.sjogrens.org/get-involved/spread-awareness/world-sjogrens-day

FINAL REMINDER: You are invited to participate in a Brown University research study. Do you want to help us understand h...
07/20/2020

FINAL REMINDER: You are invited to participate in a Brown University research study.

Do you want to help us understand how COVID-19, social distancing, and increased eye strain from increased screen time and increased reading time might be impacting dry eye?

Whether or not you experience dry eye, we are asking you to complete a brief online survey, which should take no more than 15 minutes of your time. This study is approved by the Brown University Institutional Review Board (IRB Number 2005002721). Rest assured that confidentiality will be maintained, and data will only be shared in aggregate.

To be eligible for the survey, you must be an adult of at least 18 years of age, and you must be able to understand English. If you are eligible, please click on the following link (or paste it into your web browser) to participate in the survey.

The survey requires a password. The password is: dryeye
https://brown.co1.qualtrics.com/jfe/form/SV_2gJX1xAz7gjPEuF
Password: dryeye

Do feel free to share this post with your family, friends, and others! We are interested in hearing from individuals with dry eye as well as those who do not or have never experienced symptoms related to dry eye.

If you have any questions, please contact the study’s Principal Investigator, Dr. Ian Saldanha, MBBS, MPH, PHD directly at: [email protected].

Thank you for considering participating!

07/17/2020
CDC

"We can all help slow the spread of COVID-19. Practice social distancing by keeping at least six feet of physical distance between yourself and others and wearing a cloth face covering when in public."

We can all help slow the spread of COVID-19. Practice social distancing by keeping at least six feet of physical distance between yourself and others and wearing a cloth face covering when in public.
Learn more about staying healthy and protecting your community at www.cdc.gov/coronavirus

Most women with Sjögren's will conceive and have healthy babies. However, there are potential complications, the most se...
07/16/2020
HCQ May Help Prevent Fetal Heart Block

Most women with Sjögren's will conceive and have healthy babies. However, there are potential complications, the most serious being congenital heart block (CHB). The Foundation encourages women with Sjögren's looking to conceive or early on in their pregnancy, to consult their obstetrician (OB-GYN), rheumatologist, and possibly a high-risk OB (perinatologist).

We encourage you to read the article below about how an open-label study suggests that Hydroxychloroquine (HCQ) helped reduce recurrent maternal autoantibody-mediated CHB in fetuses, of high-risk pregnant women with autoimmune diseases, including Sjögren's.

Study supports it as option for high-risk pregnant women with autoimmune diseases

Janet Church, Sjögren’s Foundation Board Chair and patient, presented at the 2020 Virtual National Patient Conference on...
07/15/2020
5 Ways a Coach Can Help Patients Live Their Best Lives | SjögrensLife

Janet Church, Sjögren’s Foundation Board Chair and patient, presented at the 2020 Virtual National Patient Conference on “5 Ways a Coach Can Help Patients Live Their Best Lives.” Learn more about Janet’s talk and her advice in the blog post below.

Keep an eye out for more information about talks from the Sjögren’s 2020 Virtual National Patient Conference that will be released in the upcoming weeks.

In this article, I write about the ways a coach can help patients get out of their own head and create their best life while living with Autoimmune disease!

#TipTuesday: Sjögren’s patients use an average of 9 medications, both prescription & over the counter, to cope with thei...
07/14/2020

#TipTuesday: Sjögren’s patients use an average of 9 medications, both prescription & over the counter, to cope with their various symptoms. Remember, it is important to wash your hands each time before taking medications & applying eye drops, dry mouth or dry skin products.

As we continue to navigate the ongoing Covid-19 crisis, we encourage you to view updates & resources available on the Foundation’s website. https://www.sjogrens.org/news/2020/coronavirus-and-the-sjogrens-foundation-updates

You are invited to participate in a Brown University research study. Do you want to help us understand how COVID-19, soc...
07/13/2020

You are invited to participate in a Brown University research study.

Do you want to help us understand how COVID-19, social distancing, and increased eye strain from increased screen time and increased reading time might be impacting dry eye?
Whether or not you experience dry eye, we are asking you to complete a brief online survey, which should take no more than 15 minutes of your time. This study is approved by the Brown University Institutional Review Board (IRB Number 2005002721). Rest assured that confidentiality will be maintained, and data will only be shared in aggregate.

To be eligible for the survey, you must be an adult of at least 18 years of age, and you must be able to understand English. If you are eligible, please click on the following link (or paste it into your web browser) to participate in the survey.

The survey requires a password. The password is: dryeye
https://brown.co1.qualtrics.com/jfe/form/SV_2gJX1xAz7gjPEuF
Password: dryeye

Do feel free to share this post with your family, friends, and others! We are interested in hearing from individuals with dry eye as well as those who do not or have never experienced symptoms related to dry eye.

If you have any questions, please contact the study’s Principal Investigator, Dr. Ian Saldanha, MBBS, MPH, PHD directly at: [email protected].

Thank you for considering participating!

07/09/2020
How Lifestyle Changes During the COVID-19 Pandemic Can Affect Vision

July is Dry Eye Awareness Month! The Sjögren’s Foundation partners with various organizations during July to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s.

Yesterday, the Alliance for Eye and Vision Research in conjunction with the Tear Film & Ocular Surface Society hosted the 5th Annual Dry Eye Awareness Month Congressional Briefing entitled How Lifestyle Changes During the COVID-19 Pandemic Can Affect Vision. Click the link below to learn more.

With the recent reliance on digital devices for e-learning for children, remote work for adults, and communications for seniors during the COVID-19 pandemic,...

#TipTuesday: Especially during these unsetting times, remember to pay as much attention to your mental health as you do ...
07/07/2020

#TipTuesday: Especially during these unsetting times, 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.

To help, view Foundation resources like our Town Hall recordings on “Meditation & Your Mindset” and “Spirituality & Stress Relief.” We encourage you to share this on your page and comment below about your own experience(s).
Foundation Town Hall Recordings: https://www.sjogrens.org/living-with-sjogrens/town-halls

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive...
07/06/2020

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. #ThisIsSjögrens

Learn more at www.sjogrens.org.

The Sjögren’s Foundation wishes everyone a happy and safe 4th of July weekend! When spending time outside, remember that...
07/03/2020

The Sjögren’s Foundation wishes everyone a happy and safe 4th of July weekend! When spending time outside, remember that Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet radiation emitted from the sun can alter immune function and lead to an autoimmune response in the body and skin.

Click the link below to learn tips on how to protect yourself from the sun. https://www.sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself

Did you miss one of the Foundation’s Free Town Hall Calls?The Sjögren's Foundation is committed to continuing to provide...
07/02/2020

Did you miss one of the Foundation’s Free Town Hall Calls?

The Sjögren's Foundation is committed to continuing to provide support that patients can rely on. This is why we launched Town Hall meetings to help people connect during these challenging times. You can listen to past meetings on topics such as:

• Telehealth
• Coping with Stress & Anxiety
• Exercise: Tips for Staying Active at Home
• Meditation & Your Mindset
• Eating Well / Staying Well
• And more!

Click the following link to learn more about Sjögren's Foundation Town Hall meetings: https://www.sjogrens.org/living-with-sjogrens/town-halls

"Many cases of small fiber neuropathy cases are caused by diabetes. Other causes include some autoimmune disorders, such...
07/01/2020
Pains, chills, fatigue, vomiting and vertigo plague me. Small fiber neuropathy causes it all.

"Many cases of small fiber neuropathy cases are caused by diabetes. Other causes include some autoimmune disorders, such as Sjögren's, some cancers and chemotherapies, HIV and certain HIV drugs, alcohol abuse, vitamin B6 toxicity, Celiac disease and several rare genetic disorders."

Even neurologists will often miss this ailment. But depending on the cause, prompt treatment might reverse the disease’s progression and allow symptoms to resolve.

You are invited to participate in a Brown University research study. Do you want to help us understand how COVID-19, soc...
06/30/2020

You are invited to participate in a Brown University research study.

Do you want to help us understand how COVID-19, social distancing, and increased eye strain from increased screen time and increased reading time might be impacting dry eye?

Whether or not you experience dry eye, we are asking you to complete a brief online survey, which should take no more than 15 minutes of your time. This study is approved by the Brown University Institutional Review Board (IRB Number 2005002721). Rest assured that confidentiality will be maintained, and data will only be shared in aggregate.

To be eligible for the survey, you must be an adult of at least 18 years of age, and you must be able to understand English. If you are eligible, please click on the following link (or paste it into your web browser) to participate in the survey.

The survey requires a password. The password is: dryeye

https://brown.co1.qualtrics.com/jfe/form/SV_2gJX1xAz7gjPEuF
Password: dryeye

Do feel free to share this post with your family, friends, and others! We are interested in hearing from individuals with dry eye as well as those who do not or have never experienced symptoms related to dry eye.

If you have any questions, please contact the study’s Principal Investigator, Dr. Ian Saldanha, MBBS, MPH, PHD directly at: [email protected].

Thank you for considering participating!

Registration ends tonight for the Sjögren’s Foundation's Virtual National Patient Conference!With over 700 people alread...
06/25/2020

Registration ends tonight for the Sjögren’s Foundation's Virtual National Patient Conference!

With over 700 people already registered, we invite you to join us for the first-ever Virtual Sjögren's Patient Conference. Learn from leading experts and connect with other patients all from the comfort of your home during this two-day event. Registration closes tonight, June 25, at 11pm EST.

Please email us at [email protected] with any questions and click the following link to register: https://4agc.com/commerce_pages/789a02db-4bab-4b5c-ad4e-3da0ea84e174

Address

10701 Parkridge Blvd., Suite 170
Reston, VA
20191

General information

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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Comments

I was wondering other than the dry eyes, nose and mouth what other problems have developed because of the Sjorgrens? I have a hiatal hernia that is requiring surgery and was told that they see it a lot in SS patients.
Did anyone make masks with Sjogrens Syndrome on it?
Can someone please give me a link to Sjögren’s masks? Thank you
Are there any people here whose labs didn't conform Sjogren's, but you had all the symptoms? How were you finally diagnosed? My rheumatologist says the only sure way to test is a lip biopsy. Going to get that done soon.
Hello All - I'm currently waiting to have a lip biopsy done to definitively tell whether I have Sjogren's or not. My bloodwork was negative. Since about a year ago, I started having the symptoms that have progressed up too now. I was diagnosed with rheumatoid in 2008 and I know the 2 commonly go together and that it is also common to have multiple autoimmune diseases. I am the one who brought up the lip biopsy since my bloodwork was negative. My Rheumy stated "most patients don't bother with that, but just treat their symptoms at home". I was irritated he brushed it off (like I was getting the biopsy for fun) although he did agree to refer me to an ENT to have it done. I asked him about treatments, if it is positive. He again said most patients manage it at home but if that didn't work, there were 2 meds I could try (both of which I've never heard of nor remember now). Is there a biologic or dmard that helps Sjogren's symptoms? I noticed some on here taking Rituxan for it, which I take for rheumatoid so that is interesting. Thanks in advance for any feedback! :)
A silly quetsion u may help me , i live in low quality of medication and war *_* the rumothologies here is very low quality my journy past six months i had dry eyes i made some tests they said allergies than i had a litel of dry mouth not sever , than my opthomolgitb made a shirmer test it was normal >15MM remothoglogist ask me for ESR CRP RF anti lo and ra all negative except RF , after month i have some joint pain not sever , but from two weeks i have sever fatige and all other symptoms stay as it was im vety confused i made lipbiopsi still waiting the result , is there any chanse , to be Sjogran all sumptoms not sever except the fatige , by the way im from Libya wish that people here can help me so much confusing
SF are you aware that your settings for your visitor posts cannot be seen by non admins of your page?
Generic Hydroxychloroquine fillers in the pills-the inactive ingredients, make my eyes feel gritty Everytime I try any of the generics. Within a week of taking the namebrand Plaquenil- it has Plaquenil on it, my eyes clear up! Generics fully do this in a month to me. I cannot be the only one that has this issue in the world especially since we take it everyday. My ODs are still non believers even with repetitious faces before them-me. Imagine if your daily eye problems is complicated by the generic med that is supposed to help you. I need others who experience this filler issue to please respond. Message me if you like. Thanks!
If this post twice sorry but I’m not sure it posted the first time. I was wondering if there is a list of specialists other than an RA doctor in the Indianapolis area. I would love to find a doctor that will spend more time with me as a patient. Thanks.
Hi, I was wondering if there is a list of specialist for the Indianapolis area that have more understanding of this disease that just an RA doctor. Thanks
On my 77th birthday, I asked dear friends to recognize Sjogren's as my daughter's newly diagnosed syndrome. I am so grateful for this foundation and am very honored to donate to this worthy cause.
So my Rheumatologist just put me on plaquenil. Has anyone taken this, and has it helped with joint pain, inflammation and global body pain from Sjogrens, Lupus, Fibromyalgia etc etc.