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, during a time of increased stress and anxiety because of the coronavirus/COVID-19, it is even more important that we come together as a virtual community to raise awareness of Sjögren's.
In our new 2020 theme, we are going to be highlighting the many Faces of Sjögren’s to expand our #ThisIsSjögrens online campaign and share your stories. You are the voice and the face of the Foundation and it is the collection of your experiences that truly portrays this complex disease.
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 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.
Let Your Voice Be Heard!
If 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 firstname.lastname@example.org with the subject line: “April Awareness Month 2020.” 30 stories will be featured in this year's campaign.
#ThisIsSjögrens 2020 Questionnaire
(Please email your answers and a picture of yourself to email@example.com.)
Name (The Foundation will only publish first names):
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 most difficult symptoms?
How has Sjögren's affected your life and how you’ve been able to effectively cope with the complexity of symptoms?
What do you wish people knew about your Sjögren’s?
Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren's?
What’s your best Sjögren’s tip?
Don't forget a picture of yourself!