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

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!

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

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

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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

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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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