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

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

Give the Gift of Hope!

Posted on Fri, Dec 29, 2017

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We at the Sjögren's Syndrome Foundation (SSF) are extremely proud of all that was accomplished in this past year and it is because of your generous support that we are able to achieve these accomplishments. Join us and take great pride in knowing that your support plays a vital part in making a difference in the fight against Sjögren's and provides hope to those living with this disease. 

The SSF strives every day to provide hope to patients and their families through our many initiatives. Hope moves us forward and helps transport us to a more promising place. A place where Sjögren’s becomes a household name, where physicians and healthcare providers know about Sjögren’s, and where there are treatments available for this devastating and life-altering disease.

As we approach the end of the year and more importantly, the season of hope, we reflect on what was a dynamic year in Sjögren’s and envision the many advancements and achievements that still lie ahead. We hope you will consider donating today and your tax-deductible year-end gift will help the SSF as we continue our work in the new year. 

Thank you for believing in us and our mission. Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Make a Donation Now

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We encourage you to share this with family and friends so they too can help by having the opportunity to support the SSF. Thank you!

Topics: #ThisIsSjögrens, Advocacy, 50in5: Breakthrough Goal, April Awareness Month

April is Sjögren’s Awareness Month!

Posted on Sat, Apr 01, 2017

SSF This Is Sjogren's.pngApril is Sjögren’s Awareness Month! To portray the entire patient experience, in our This Is Sjögren’s Awareness Campaign, the Sjögren’s Syndrome Foundation (SSF) is drawing facts and figures from our recent “Living with Sjögren’s survey findings. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being. 

The independent nationwide survey, designed by Harris Poll along with the SSF and a volunteer committee of patients and healthcare providers, was mailed to Foundation members in the spring of 2016. Nearly 3,000 adults shared their experiences with the disease and its physical, financial and emotional effects on their lives.

With the support of our members, this survey was developed to help the SSF:

  • Educate regulatory agencies and pharmaceutical companies about a need for a therapeutic drug for Sjögren’s
  • Support the need for additional SSF Clinical Practice Guidelines (CPGs) for how to treat and manage Sjögren’s
  • Provide researchers with information about the variety and severity of experiences patients have with Sjögren’s
  • Create greater awareness of this disease among consumers and healthcare professionals

Every day the SSF is sharing a fact from these survey findings or other information about the disease on our social media accounts to show: This is Sjögren’s (#ThisIsSjögrens)! While the daily post give a small glimpse into Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease. SSF_17114.03-4-2.png

How Can You Get Involved:

We encourage you to use April Awareness month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s with your family and friends. 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! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. Together, we will transform the future of Sjögren’s!

SSF This Is Sjogren's April 2017.jpg

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

 

Topics: April Awareness Month, Children with Sjogren's,, Men with Sjogren's,, coping with sjogren's, Advocacy, #ThisIsSjögrens

Sjögren's Awareness Month is Almost Here!

Posted on Mon, Mar 20, 2017


ATT00002.pngApril is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it.

Sjögren's is often described as an invisible illness because many of the disease’s debilitating symptoms cannot be physically seen. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with Sjögren's. 

This April, the SSF is going to build upon our This Is Sjögren’s campaign from last year! Our goal is to help others visualize the disease from a patient’s perspective, and close the gap between the reality of Sjögren’s and the perception that many non-patients have with Sjögren’s! 

To better portray the entire patient experience, in our #ThisIsSjögrens 2017 April Awareness campaign, the SSF will be drawing facts and figures from our recent national patient survey. This survey, which was conducted last year, has given the SSF amazing data about how our patients lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being!  

Each day, throughout April, the Foundation will post a different #ThisIsSjögrens factoid or patient phrase on social media – so stay tuned! And while the daily post will give a small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease.

Let Your Voice Be Heard!

SSF This Is Sjogren's.png

As the voice of the SSF, we want to hear form you! Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will transform the future of Sjögren’s.                                             

Example: Sjögren’s means choosing a medication that will help with my fatigue and joint pain but knowing it will make my eyes drier and more painful. #ThisIsSjögrens!

Topics: April Awareness Month, Advocacy, coping with sjogren's

This is Sjögren’s!

Posted on Fri, Apr 01, 2016

AprilisSjogrensAwarenessMonthToday begins Sjögren’s Awareness Month and for the next 30 days we will use your words to help raise awareness of this debilitating and complex disease.

You are the voice of the Sjögren’s Syndrome Foundation, which is why last month we asked you to share with us one phrase that represents what it is like to live with Sjögren’s. Everyday in April we will post a different one of your phrases on social media that reflects living with this invisible disease.

Each phrase will give a small glimpse into the life of Sjögren’s patients and by the end of April, we hope these 30 phrases will help others better visualize and understand the disease. 

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Remember that by talking with one person at a time, one community at a time, one physician at a time and one company at a time – together we will reach our goal and conquer Sjögren’s!  

This is Sjögren’s!

#Day1: I look healthy on the outside, however my disease is attacking my internal organs and destroying me from the inside out. #ThisIsSjögrens #SjögrensAwarenessMonth #TheSjögrensJourney

This_is_Sjogrens.-1

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

What is Sjögren’s?

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.

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children.

 

Topics: Symptoms, Sjogren's, Advocacy, April Awareness Month

April is Sjögren’s Awareness Month

Posted on Thu, Mar 17, 2016

April is Sjögren’s Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who live with its numerous daily manifestations.

AprilisSjogrensAwarenessMonthSjögren's is often referred to as an invisible disease, one that, while patients may experience severe discomfort, people don’t physically see as debilitating. This can be extremely isolating for patients and also leads to the great misunderstanding about the seriousness of the disease.

The SSF wants to help close the gap between the reality of living with Sjögren’s and the perception that many non-patients may have with our This is Sjögren's! April campaign.

To help others visualize and understand what it is like to suffer from Sjögren’s, the Foundation will post a different phrase on social media everyday throughout the month of April that reflects what it’s like to live with the disease.  Each phrase will give a small glimpse into what it’s like to live with Sjögren’s and by the end of April we hope these 30 phrases will show the complexity and seriousness of the disease. 

An example:
“I live in constant uncertainty when planning my day because I don't know if or when fatigue will hit me. This is Sjögren's.” 

You are the voice of Foundation and we want to hear from you! 

Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will help others to better understand Sjögren’s! 

What is Sjögren’s?

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. 

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children 

Topics: Sjogren's, coping with sjogren's, April Awareness Month

Learning to Thrive with Sjogren’s

Posted on Wed, Apr 01, 2015

SSF_Color_Logo

30 Words for Sjögrens Awareness 

April is Sjögren’s Awareness Month and you are the voice of the Sjögren’s Syndrome Foundation. That is why this April we will be using your words to help raise awareness of the disease. Last week we asked: "If you are living with this disease or know someone who is, what one word represents 'Sjögren’s' to you?"

For the next 30 days, we will be posting one word every day that describes what the disease means to those affected by it, along with a fact or tip that relates to the word.

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Awareness comes in many different forms, which is why we hope you will share our posts on your social media pages and help make Sjögren’s a household name!

#Day1: Complex. Sjögren’s is not a “cookie cutter” disease & affects patients differently. Many patients experience dry eyes, dry mouth, fatigue and joint pain, but Sjögren’s also causes dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. And while some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning.

We encourage you learn more about the various symptoms of Sjögren’s by clicking here.  #30Words4Sjögrens #SjögrensAwarenessMonth #Learning2Thrive 

Click here to view our daily campaign on Facebook!

30WordsApril

Topics: Symptoms, April Awareness Month

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