Tarlov Cyst Disease Awareness Day
Putting TCD on the Map!
May 16, 2024
Advocate - Educate - Validate
Tarlov Cyst Disease (TCD) is an NIH-registered rare disease of the spinal nerve roots. According to the National Organization for Rare Disorders, "Tarlov cysts are fluid-filled sacs that affect the nerve roots of the spine, especially near the base of the spine (sacral region). Individuals may be affected by multiple cysts of varying size." (NORD, 2021) TCD can lead to intractable pain, loss of body function, and paraplegia. Treatment options and research are not widely known or practiced. Together we can change that!
Click the picture above to hear TCD patients explain their experience with this disease. https://youtu.be/6zrj4So7-LU
* May 16, 2024*
Because TCD is not widely known or understood by patients and the medical community alike, many people with TCD go undiagnosed despite the presence of symptoms. Tarlov Cyst Disease Awareness Day is a grassroots effort from warriors living with TCD who are striving to raise awareness and support by advocating, educating and validating the disease. Show that you care for the rare by joining in the efforts to:
Raise awareness for this rare disease so patients receive accurate, expedient diagnoses
Empower patients and families to self-advocate
Increase research efforts
Increase support in each state for those living with TCD
Give people living with TCD an opportunity to open up the conversation about the challenges of living with the disease
Direct people to available resources to assist in diagnosis and treatment
Get Involved
Sign-up to join the effort in raising awareness, and to receive email updates about TCD Day. Go to our Get Involved page for templates and ideas.
Are you looking to make a difference for fellow cysters and mysters in your home state? We are searching for U.S. State Advocates to take the lead in the charge by submitting your state's proclamation request to name May 16, 2023 as Tarlov Cyst Disease Awareness Day. Help us put TCD on the map...one state at a time!
Proclamations are the state's way to officially show their support of various causes or events. We've made the process for submitting a request to your state's elected officials easy with a copy and paste template that should only takes a few minutes to submit. Requests can only be submitted by a United States resident of that particular state. This is generally something that will need to be done 8-12 weeks prior to May 16 to allow your state officials time for approval (most state sites will indicate their process and timeline for submissions as each state has their own guidelines).
Sign-up to see if your state is already being covered and for more information on how and what to submit!
Questions? Connect with us at tarlovcystawareness@gmail.com
Resources
Find resources to support your effort to raise awareness in your community.
Start by visiting your state's official website. Proclamation requests are typically handled through your Governor's office, however how to submit can vary from state to state. Head to your state's official site and search "proclamation" to find out how to properly submit in your state. Or go to our page to find a template proclamation and the link to your state's proclamation site.
To learn more about Tarlov Cyst Disease, visit the Tarlov Cyst Disease Foundation. The Tarlov Cyst Disease Foundation is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis and development of successful treatments and outcomes for symptomatic Tarlov cysts. The Foundation is incorporated exclusively for scientific, educational, and charitable purposes that will seek to improve the level of understanding, diagnosis and treatment of Tarlov cysts.
**TCD Awareness Day is a grassroots project by fellow cysters and is not directly affiliated with nor managed by the Tarlov Cyst Disease Foundation, any of the Board of Directors, or any TCD Facebook group administrators.**
Community
Invite your friends, family, co-workers, neighbors and community to join you on May 16, 2024 by using their voices to share more about this rare disease. Encourage your community of supporters to share posts or graphics along with their story behind why they want to raise more awareness and share more information about TCD.
Advocate
Share your story or support with groups or on your social media platforms! Use facebook, instagram, tiktok, youtube, twitter, or your favorite social channel to share TCD Awareness Day with your followers. Post graphics and videos or share information and statistics. Use this day to educate, empower and establish hope!
Educate
Talk with your doctors, nurses and friends in the medical community about TCD. Use the awareness day to start up those conversations. Share more about how you live and cope with the disease either as a fighter, supporter or friend. Encourage physicians to research this rare disease to better understand the signs, symptoms and proper treatments available.
Validate
Seek out the various private and public social media groups and pages that pertain to Tarlov Cyst Disease. Connect with fellow fighters, get your feelings validated, and join the community of warriors.
