Coming Together to Conquer Sjögren’s
Sjögren’s Awareness Month was first established in 1998 when New York Congresswoman, Louise Slaughter, read it into the Congressional Record. Each year the Foundation works to keep the spirit of national awareness alive every April. And now, as we pass a year mark into a the COVID-19 pandemic, it is even more important that we come together as a virtual community to raise awareness of the complexities of Sjögren’s.
In our 2021 theme, Coming Together to Conquer Sjögren’s, we are going to be highlighting you, the many Faces of Sjögren’s, to expand our #ThisIsSjögrens online campaign. The Foundation was founded by a patient for patients. You are the voice and the face of the Foundation and it is the collection of your experiences that truly portrays this complex disease. During this past year apart, we not only want to raise awareness of Sjögren’s, but also share how patients are effectively coping with the disease and offer advice for others.
Sjögren’s is one of the most prevalent but still lesser-known autoimmune diseases, affecting an estimated four million Americans, both men and women of different ages and ethnicities. One of the difficulties with awareness is that Sjögren’s isn’t a “cookie-cutter” disease and symptoms can manifest in various ways from patient to patient. Many symptoms are also referred to as invisible because you cannot see someone’s profound fatigue or when the disease has advanced to his/her internal organs.
This leads to a misunderstanding about the seriousness of the disease, which can be extremely isolating for those living with it. The Foundation wants to help close the gap between the reality of living with the disease and the perception that many non-patients may have by showing the faces of real patients, talking about how the disease affects them and how we are all working together to conquer Sjögren’s.
Every day in April, the Foundation will highlight a different patient and share a glimpse into their life living with the disease on our website and social media accounts. While each daily post will only give a small insight into What is Sjögren’s, by the end of the month, we hope these 30 posts will showcase the complexity of the disease and the strength of our community.
Let Your Voice Be Heard!
If you would like your story featured in this year's campaign, please email us your answers from the questionnaire below and a picture of yourself, to etrocchio [at] sjogrens [dot] org (etrocchio[at]sjogrens[dot]org) with the subject line: “April Awareness Month 2021.” 30 stories will be featured in this year's campaign.
#ThisIsSjögrens 2021 Questionnaire
(Please email your answers and a picture of yourself to etrocchio [at] sjogrens [dot] org (etrocchio[at]sjogrens[dot]org).)
- Name (The Foundation will only publish first names):
- Current age:
- Age when diagnosed (or What is your connection to the disease):
- Please finish with the following sentence: "Since I was diagnosed with Sjögren’s, I have learned..."
- What are your 3 most difficult symptoms?
- What are ways that you cope with your most difficult symptoms?
- What is one of the ways that you’ve been able to effectively cope with symptoms during this past year in the pandemic?
- What is the best tip you would share with another Sjögren’s patient?
- How does the Sjögren’s community and the Foundation give you strength?
- What do you wish people understood about Sjögren’s and how it affects you?
- Don't forget a picture of yourself!
Email your response to etrocchio [at] sjogrens [dot] org (etrocchio[at]sjogrens[dot]org). Thank you for your support!