Proclamation Template
For those in the United States or Canada, here's a template for a proclamation you can submit to your state/province in honor of TCD Awareness Day. Feel free to change any wording to better suit you and your state/province requirements or needs. United States residents, find links to the various state proclamation sites on the Get Involved page.
Suggested Proclamation Language to Copy and Paste for within United States or Canada
WHEREAS, Tarlov Cyst Disease is classified as a rare disease where cerebrospinal fluid-filled sacs form in the nerve roots near the base of the spine, however these cysts can be present along any part of the spine; and
WHEREAS, Tarlov cysts may be known to be asymptomatic, but due to nerve compression and inflation, many cysts may cause bone erosion, radicular pain, weakness, and neurologic dysfunction including bowel or bladder changes. When symptomatic, Tarlov Cysts can be progressive, extremely painful and debilitating, and can often limit the patient’s ability to walk, sit or stand; and
WHEREAS, more women are diagnosed with Tarlov Cyst Disease than men; and
WHEREAS, Tarlov Cyst Disease symptoms include, but are not limited to, varying levels of intractable pain that are usually defined by cyst location and associated nerve distribution. Progressive nerve compression can lead to neurological damage. Pain often mimics other conditions therefore making this rare disease difficult to diagnose; and
WHEREAS, treatment for Tarlov Cyst Disease generally focuses on controlling symptoms, with some patients finding long term relief through surgical intervention; and
WHEREAS, some patients with Tarlov Cyst Disease may also present with additional co-morbid conditions such as connective tissue disorders. Patients often remain at an increased risk of developing other conditions and diseases due to the limited invasive medical treatments to provide relief of pain and symptoms. This disease and its symptoms vary widely depending on the severity of each case; and
WHEREAS, the need for research on the origins of the disease, non-invasive treatments, and the continued support of neurosurgical procedures is imperative; and
WHEREAS, insurance companies often deny patients necessary treatments and surgery under misinformed pretenses that they are experimental, unnecessary, or ineffective.
NOW, THEREFORE, I, (name & title) of the State/Province of (state/province name), do hereby proclaim May 16, 2024 as Tarlov Cyst Disease Awareness Day.
Outside of the US/Canada?
For those outside of the United States or Canada, who would like to get involved in these efforts, please consider researching your home country or areas guidelines or rules on submitting a proclamation request. We would love to get several countries involved, but we are just a small group of volunteers with limited knowledge on other country's stance on these types of initiatives.
Please connect with us by sending an email to tarlovcystawaeness@gmail.com if you would like to take the lead on these efforts in your country!
