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

Conquering the Complexities of Sjögren's

Posted on Fri, Apr 12, 2019

April is Sjögren’s Awareness Month and with an estimated four million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but still 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.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrens campaign to help others visualize the vast impact of the disease by posting a new patient story every day in April. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will shine a light on Sjögren’s and ensure a greater understanding of this complex disease.

We encourage you to use Sjögren’s Awareness Month as a way to talk about the disease. Every day 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. Click here to learn more.


Day 1

Candi B., 46 (diagnosed at 43), Disabled (Former payroll manger)

My most difficult Sjögren's symptoms is living with 49% lung function. I wish people knew how dangerous it is to call this only a “dry eye and dry mouth disease.” 

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 2

Jen Day 2

 

Jen B., 46 (diagnosed at 45 after 3 years of being misdiagnosed)

My most debilitating Sjögren's symptoms are pain, fatigue & itchiness. I wish people knew that just because I’m smiling & getting things done, it doesn’t mean I’m not in excruciating pain.

As a patient, remember to put yourself first. Refusing to run yourself into the ground isn’t selfish. Sjögren's Warriors have compromised immune systems, which is invisible.

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 3

Day 3 Randy

Randy K., 49 (diagnosed during mid-thirties)

I wish people understood that this complex disease affects both men & women of all ages. As a Sjögren’s patient, remember to stay informed and keep asking questions. Never assume that things can’t change.

Click here to learn more about the SSF & symptoms of Sjögren's.

Day 4

Day 4

Jaeden, 9 (diagnosed at 6)

My most difficult symptoms are body aches, dry mouth & muscle pain. The hardest part of living with Sjögren's is that people don’t understand when I need to take breaks.

Click here to learn more about pediatric Sjögren's.

Day 5

Day 5

Erin B., 34 (diagnosed at 24)

Sjögren’s means that outwardly I look normal but some days I’m so exhausted I can’t get out of bed, which isn’t an option as a mom. It’s hard when people don’t understand it’s not a “tired” you can fight through by having some coffee or taking a nap.

Click here to learn more about fatigue and Sjögren's. 

Day 6

Pricilla Day 3 

Priscilla A., 43 (diagnosed at age 41)

Sjögren’s means that my disease cannot be treated by just taking a pill.

Click here to learn more about treatment options and coping methods with Sjögren's

Day 7

Day 7 Allison

Allison, 24 (diagnosed at 23)

My most difficult Sjögren's symptoms are brain fog, fatigue and constant aches & pains. I wish people knew that living with this disease means my smile hides more than you know.

Click here to learn more about brain fog and Sjögren's.

Day 8

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Leah G., 38 (diagnosed at age 35)

Sjögren's means I live with constant fatigue, joint/ muscle pain, and brain fog. I wish people knew to be patient me. I only complain when I'm feeling really bad so know that if I'm complaining, it means I feel terrible.

Click here to learn more about how to talk with family and friends about Sjögren's.

Day 9

Image may contain: 1 person, smiling, eyeglasses, text and closeup

Sally V., 69 (diagnosed at age 62 after 20 years of undiagnosed symptoms)

Most of my body has been affected by this disease. My best tip for Sjögren's patients is to allow yourself rest but don’t give up. And thank you to the SSF! The Foundation has changed the whole outlook for patients.

Click here to learn more about symptoms of Sjögren's.

Day 10

Image may contain: 1 person, smiling, standing and outdoor

Ashlyn A., 23 (diagnosed at age 21)

My most difficult Sjögren's symptoms are living with cystic lung disease, low white blood cell counts & dry eyes.

I wish people knew that it’s not easy living with a chronic disease, but I’m still me. I have cysts in my lungs, but I won’t give them to you. I want to workout, but it’s hard sometimes with my breathing. I was able to have lung surgery & then get married four months later like nothing happened. I’m still me. I’m just living with Sjögren's.

Click here to learn more about Sjögren’s-Related Lung Disease.

Day 11

Image may contain: 1 person, smiling, selfie and closeup

Tamika L., 40 (diagnosed at 32)

I wish people understood that Sjögren’s can affect the entire body. Although this disease seems invisibles to others, don’t ignore symptoms. Stay educated & take charge of your health!

Click here to learn more about how to be your own best patient advocate by gaining a thorough understanding of Sjögren's and signing up as an SSF member to receive our patient newsletter, The Moisture Seekers.

Day 12

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Grace K., 18 (diagnosed at age 17)

Brain fog is one of my most difficult Sjögren's symptoms. I find myself constantly forgetting things & often stare off for long periods of time, but this disease does not define who I am. Eliminating gluten & dairy from my diet has helped me manage my symptoms.

Click here to view resources about chronic illness and diet, like “Grain Brain,” in the SSF bookstore.

Day 13

Kelly Day 13

Kelly P., 50 (diagnosed at 46 after 8 years of being misdiagnosed) 

Sjögren’s means I live with fatigue, neuropathy, irritable bowel syndrome (IBS), and migraines. If you know someone with Sjögren’s, offer your time or lend a hand because while many symptoms are invisible, we still need support.

Click here below to learn more about headaches and Sjögren's.

Day 14

Kiana T Day 14

Kiana T., 30 (diagnosed at 23)

My most difficult Sjögren's symptoms are inflammation in my fingers, chronic pain throughout my body and brain fog.

Click here to learn more about chronic pain & Sjögren's.

Day 15 

Daty 15 Roger

Roger T., 50 (diagnosed at 48)

My most difficult Sjögren's symptoms are joint pain, burning muscles, dry eyes and dry mouth.

Sjögren's is often described as a disease that mostly affects women and causes dry eyes & mouth, but people don’t realize it also affects men and a person’s whole body. I have difficulty walking because of numbness/burning in my toes and legs.

Click here to learn more about peripheral neuropathy and Sjögren's.

Day 16 

Yvette Day 16

Yvette Y., 42 (diagnosed at 28)
 
Sjögren’s means living with tooth decay, joint pain, fatigue and having to explain what your disease is to everyone. It’s discouraging to be in the ER and need to describe Sjögren’s to your doctors/nurses. My best tip is to keep talking about the disease. Our pain, our story connects us and that helps.
 
 
Day 17 
 
Day 17
 
Jeri J., 29 (diagnosed at 28)
 
My most difficult Sjögren's symptoms are extreme fatigue, dry mouth and dry eyes.
 
As a basketball coach, it’s hard to manage fatigue that can’t be “pushed through,” like the athletic world teaches. My best Sjögren's tip is to make boundaries and stick to them. The health risks of letting yourself get run down isn’t worth it.
 
 
 Day 18 Susan
 

Susan B., 63 (diagnosed at 60)

I wish people knew that even though I’m still active, I often don’t feel well because of Sjögren's fatigue, pain & dryness. While I don’t want to seem like I’m complaining to family & friends, I know not talking about my health perpetuates their misunderstanding about the disease.

Remember to talk about Sjögren's in your life & connect with other patients who understand living with this disease. 

We hope you will connect with the SSF by becoming a member & receiving our newsletter (https://www.sjogrens.org/home/get-connected/become-a-member) or joining our online community SmartPatients (https://www.smartpatients.com/partners/ssf).

Day 19
Day 19 K

Keri F., 41 (diagnosed at 39)

My most difficult Sjögren's symptoms are neuropathy, dry throat, dry mouth & fatigue. I wish people knew how different one day can be from the next when living with this disease. Feeling “ok” enough to put makeup on can be a victory.

Remember to take the to care for yourself. It makes living with Sjögren's a little less hard

Click here to learn more about Sjögren's reflux & your throat.

Day 20

Day 20 Grace

Grace T., 13 (diagnosed at 9)

My most difficult symptoms are dry red eyes, joint pain, neuropathy & dryness. I wish people knew that Sjogren’s is a serious disease that is often underestimated.

Click here to learn more about this complex disease.

Day 21

Cleana M Day 11

Cleana M., 45 (diagnosed at 30)

My three most difficult Sjögrens symptoms are joint pain, peripheral neuropathy & difficulty swallowing.

Click here to learn more about swallowing medications with dry mouth. 

Day 22

Ray Day 22 

Ray H., 54 (diagnosed at 44)

I wish people understood that men can also be diagnosed with Sjögren’s. My most difficult symptoms are dry mouth, dry eyes, peripheral neuropathy & fatigue. My best advice is to pace yourself, be balanced with commitments & remember that it’s ok to say “no”.

Click here to learn more about Sjögren's dry mouth.

Day 23

Day 23 Natasha

Natasha G., 28 (diagnosed at 25)

My most debilitating Sjögren's symptoms are total body inflammation, autonomic dysfunction & widespread pain. Remember to advocate for yourself. I started having symptoms in high school but because of my age, no one even considered this disease. I had to advocate for myself to be tested ten years later. With doctors, friends & family, remember to always advocate for yourself in order to get the best quality of care & support.

Click here to learn more about how to be your own best advocate & take control of your health by receiving our newsletter & becoming an SSF member.

Day 24

Amy Day 24

Amy R., 50 (diagnosed at 39)

Sjögren's means living with joint pain, fatigue, migraine headaches & brain fog, but the most frustrating part of this disease, is trying to find your new normal when you look normal but don't feel that way! I wish people understood how debilitating Sjögren's can be. Some days I can barely drag myself out of bed because of joint pain & headaches. 

Click here to learn more about joint pain & Sjögren's.

Day 25

 Stephanie Day 25

Stephanie B., 29 (diagnosed at 20)

I’m currently pregnant with my second son. I had no idea during my first pregnancy that Sjögren’s can cause fetal block. I’ve had a few flare ups already & am having weekly fetal echo exams, but I’m thankful for my husband, team of doctors & support group.

I wish people knew that Sjögren’s is typically a progressive disease that will get worse with time, which scares me.

Click here to learn more about pregnancy & Sjögren's.

Day 26

Day 26

Rebecca B., 37 (diagnosed at 32)

I wish more people understood the seriousness of this complex disease. Last month I was diagnosed with MALT lymphoma of the salivary gland. If you are diagnosed with Sjögren’s, know you are not alone in this fight!

Click here to learn more about lymphoma & Sjögren's.

Day 27 

Day 27 Amy

Amy C., 42 (diagnosed at 36)  

I wish people understood that Sjögren’sis all encompassing. I have become so much better at managing this disease in the last 6 years, but I know I have a long way to go. While Sjögren’ssucks, life doesn’t have to. I keep moving because I am strong, and I have Sjögren’s.  

Click here to learn more about the significant physical & emotional burdens of Sjögren’s.

Day 28

Day 28 Cam

Cameron P., 15 (diagnosed at 14) 

My most difficult Sjögren’s symptoms are joint/muscle pain, fatigue, chronic meningitis & multiple organ involvement requiring hospitalization. I wish people understood that this is NOT just a disease of women over 40. My best tip is to listen to your body, take your time & a positive attitude is key!

The SSF sponsors over 65 groups throughout the United States & Canada. In addition to our local support groups, the SSF supports 3 special support groups: patients under 40, men with Sjögren’s & pediatrics. Click here to learn more about Sjögren’s support groups.

29

Maria Day 29

Maria G., 39 (diagnosed at 28)

My three most difficult Sjögren's symptoms are dry mouth (including swollen gums & sore throat), brain fog & muscle pain.I wish people understood that many symptoms of this complex disease cannot be seen, like extreme fatigue. A good diet, exercise routine & mediation has helped me but there’s no cure or single treatment for this disease.

Click here to learn more about diet & Sjögren's

Day 30

Day 30

Darolyn S., 34 (diagnosed at 27 after being misdiagnosed since her teenage years)

My most debilitating Sjögren's symptoms are neuropathy, chronic hives, unpredictable flares, fatigue & a low white blood cell count causing me to be more susceptible to infections.

When I’m feeling my worst, my initial desire is to disconnect from other but my bet tip for living well with this complex disease is to work at maintaining your close relationships. While it is difficult for others to understand this often-invisible disease, my hope is that more friends & family members of patients try to learn more about Sjögren's.

To end Sjögren’s Awareness Month, the SSF is premiering the first episode of “Exploring Sjögren’s” a new YouTube series to explore the daily lives of patients, while we also discuss the work being done to help conquer the complexities of this disease.

Click here to see the first episode on our new YouTube channel.

Exploring Sjögren's

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

 

Topics: April Awareness Month, #ThisIsSjögrens

Sjögren's Awareness Month 2019!

Posted on Mon, Apr 01, 2019

Conquering Sjögren's

#ThisIsSjögrens 

April is Sjögren’s Awareness Month!  Sjögren’s is one of the most prevalent but still lesser known autoimmune diseases. It 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.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrensonline campaign. We will post every day in April, using one or more of our social media channels, to create a better understanding of the disease. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will help others visualize the vast impact of the disease.

Help us conquer the complexities of Sjögren's this April because every day is an opportunity to start a conversation about Sjögren’s and how it affects you. The more others understand, the more support you can find. 

2019_FB_Frame_02Get Involved!


Day 1
Candi 2019 April

Candi B., 46 (diagnosed at 43), Disabled (Former payroll manger)

My most difficult Sjögren's symptoms is living with 49% lung function. I wish people knew how dangerous it is to call this only a “dry eye and dry mouth disease.” Remember to advocate for your health before this disease becomes fatal. #ThisIsSjögrens

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

If you do not use social media, click here to view the daily posts.

                                             

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

It's almost Sjögren's Awareness Month!

Posted on Fri, Mar 15, 2019

Conquering Sjögren's

#ThisIsSjögrens 

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 are living with it. Even though Sjögren’s awareness continues to rise, it is still one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease.

Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrens social media campaign to help others visualize what it is like for patients living with the disease.   

We will post every day in April, using one or more of our social media channels, to create a better understanding of the disease. To help portray the entire patient experience, the SSF will be using Sjögren's facts along with real patient stories to help close the gap between the reality of Sjögren’s and the perception that many non-patients have. 

Help us conquer the complexities of Sjögren's this April by following our #ThisIsSjögrens social media posts. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April we hope these 30 posts will shine a light on Sjögren’s and ensure a greater understanding of this disease.

Let Your Voice Be Heard!

SSF This Is Sjogren'sIf you would like you and your story can be featured in this year's 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 2019.” 30 stories will be featured in this year's campaign. 

 


#ThisIsSjögrens 2019 Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) April FB Frame

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 is your most difficult symptom that people don't understand: 

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 Awareness Month,, April Awareness Month, #ThisIsSjögrens, Sjögren’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

Give the Gift of Hope!

Posted on Fri, Dec 29, 2017

give the gift of hope BANNER.jpg

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

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

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

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