Sjogren’s Syndrome Awareness Month is observed in the U.S. throughout the month of April. During this time, people are encouraged to raise awareness of this disease that is still mostly unknown to the general population. Sjogren’s affects one to four million Americans, and nine out of 10 of those affected are female. Sjogren’s is a tough condition to understand because of the variety of symptoms and the need for immunosuppressants to manage them. This is why health foundations across the U.S. have launched campaigns and organized research programs targeted at obtaining insight from Sjogren’s patients through focus groups and surveys. Input from these sessions has been invaluable in formulating and fine-tuning existing therapy options.
History of National Sjogren's Syndrome Awareness Month
As far back as 1930, Swedish ophthalmologist Gustav Sjogren was the first to describe the symptoms of Sjogren’s Syndrome, which is characterized by a lack of tears and saliva. He noticed that one of the most common symptoms of the condition, known as ‘Keratoconjunctivitis,’ was dry eyes. At that time, he submitted a doctoral thesis detailing 19 females, most of whom were postmenopausal and had arthritis, exhibiting the clinical and pathological aspects of the disease.
Sjogren’s study was not taken seriously by health professionals at the time because of the lack of consistency in the symptoms of the illness. A study released by Sjogren in 1951 was the culmination of his extensive research on the disease, and it included the analysis of 80 patients with keratoconjunctivitis. Also, arthritis was a common problem among a large number of patients, according to his paper. As a result of his research and the lectures he gave in connection with it, Sjorgren’s Syndrome gained more attention across the globe. It was Sjogren himself who invented the name ‘keratoconjunctivitis sicca’ and began to identify it as Sjogren’s Syndrome in health literature.
In 1998, the late New York Congresswoman Louise Slaughter read into the Congressional Record a resolution establishing Sjogren’s Awareness Month. To better understand the illness, develop better diagnostic tools, and discover strategies to prevent, manage, and cure it, Sjogren’s Syndrome is now being studied in numerous research institutes across the U.S.
In 2010, the Medical Research Council in the U.K. approved the establishment of the U.K. Primary Sjogren’s Syndrome Registry, a tissue biobank containing samples taken for research. Those interested in participating in clinical trials and genetic investigations of Sjogren’s Syndrome are welcome, as are academics interested in the condition.
National Sjogren's Syndrome Awareness Month timeline
A Swedish ophthalmologist diagnoses a patient with symptoms of dry eyes.
The newly discovered autoimmune disease is named after the discoverer, Henrik Sjogren.
An international non-profit organization is established to serve the needs of people affected by Sjogren’s Syndrome.
Sjogren’s awareness month is established and passed into law.
National Sjogren's Syndrome Awareness Month FAQs
Where did Sjogren's syndrome come from?
Scientists aren’t sure what causes Sjogren’s syndrome in some people. People with certain genes are more likely to get the disorder, but it looks like there must also be a trigger, like an infection with a certain virus or strain of bacteria.
Is Sjogren's inherited?
If a person gets Sjogren’s syndrome, they probably got it from one or both of their parents. However, something in their environment, like a viral or bacterial infection, may have also caused it to become active.
Does Sjogren's shorten life span?
Even though patients’ life expectancy isn’t usually affected, their quality of life is. When secretory glands don’t work, the eyes, mouth, throat, and other organs become dry. This can cause pain, fatigue, and problems with digestion.
How to Observe National Sjogren's Syndrome Awareness Month
Wear a ribbon
Wear a purple ribbon or pin to show your support for Sjogren's Syndrome awareness. It’s usually a very tough and painful experience so patients always need all the support they can get.
Donate to charity
Make a donation to a charity that funds research into Sjogren's Syndrome. As scientists continue to search for better treatments, public donations go a long way to ensure they have all the tools they need.
Share information about Sjogren's Syndrome with your friends and family members. Use this time to explain the different preventive steps that can be taken.
5 Facts About Sjorgen's Syndrome
It affects your whole body
Although the main symptom is dry eyes, this disease causes inflammation to the entire body.
It’s a difficult disease to diagnoze
Being an autoimmune disorder, Sjogren's Syndrome shares symptoms with many other ailments and this makes it difficult to diagnose.
The disease is more prevalent in women
Sjogren's Syndrome has been found to affect women who are over 40 with the majority of the diagnosis made in the ages 45 to 55.
It has two primary symptoms
The two most common symptoms are dry eyes which make one feel like they have sand in their eyes and dry mouth which makes it difficult to chew.
It is not life threatening
People do not die from Sjogren's Syndrome but it does make life very frustrating.
Why National Sjogren's Syndrome Awareness Month is Important
It publicizes a rare disease
Sjorgen's Syndrome is a relatively rare disorder, affecting only about one in 4,000 people. This means that many people may not have heard of it before, so raising awareness is important.
It’s an opportunity to create top-of-the-mind awareness
Many people with Sjorgen's Syndrome may not even realize they have it. Raising awareness can help ensure that more people receive an accurate diagnosis.
Provides more information on treatments
There is no cure for Sjorgen's Syndrome, but there are treatments available that can help improve symptoms. Raising awareness ensures that more people are aware of these treatments and can access them if needed.
National Sjogren's Syndrome Awareness Month dates