Tarlov Cyst Disease Awareness Day is here to promote, advocate, educate, and validate those living with Tarlov cyst disease.
How to Observe Tarlov Cyst Disease Awareness Day
Looking for ideas to get involved with this important day? Check out some of these ideas to get started:
Become an Advocate
According to the day’s website, individuals and groups are invited to advocate for Tarlov Cyst Disease Awareness Day in their local areas and states. Promote the event with local government officials, health care facilities, educational organizations and much more!
Get More Informed
Anyone who is interested in learning more can get information by doing a bit of online research, heading over to a local library, or signing up for emails directly from the Tarlov Day website. Don’t forget to share what you learn with others!
Connect with Others
This is one of the many health issues that can cause some people to feel isolated and alone. Get connected with others who have their own diagnosis, or friends and family with this disease, by joining groups on social media or support groups in your local area.
Tell Your Tarlov Cyst Disease Story
Those who have been impacted by this disease can help to inform those in their sphere of influence by sharing their own story. On the day, make a post on social media, tell the story to a group of friends or find another way to advocate through personal experiences!
History of Tarlov Cyst Disease Awareness Day
Tarlov Cyst Disease Awareness Day was first observed in 2023 following the efforts of the founder, Katie Maskey. Today, more than 20 different states and five Canadian provinces have officially recognized the day, with the hope of more places and groups coming along in the future to connect with this important event.
One of the purposes behind the day is to improve education and information so that patients can receive more expedient and accurate diagnoses with less invasive options for treatment!
While the history of this disease dates back to the 1930s, when the cysts were first identified, it remains a rather mysterious health issue. The disease is named after the American neurosurgeon, Isadore Tarlov, who first described them.
These cysts are most often located on the spinal cord and are often asymptomatic. In many cases, Tarlov cysts are only discovered through MRI or other imaging when scanning for different health concerns.
If the cysts become large enough, they can begin to cause pain, muscular spasms, paresthesia, weakness, numbness or tingling, loss of limb use, or sexual dysfunction.
Some people can have clusters of these in different areas along the spinal cord and the location will determine what type of symptoms might occur.
Women are more likely to experience symptoms from Tarlov cysts. While various treatments have been tried in the past, patients continue to need better research that will lead to improved options, particularly with the ability to avoid surgery whenever possible.
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