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Introducing the Tarlov Cyst Disease Education Kit: Now available at the Society!!
- Nov 25
- 3 min read
For years, people living with Tarlov Cyst Disease (TCD) have been forced to navigate a medical landscape filled with confusion, dismissal, and old assumptions that refused to die. Many of us know the script by heart:
“Your cysts are incidental.”
“They don’t cause pain.”
“There’s nothing more we can do.”
Meanwhile, research tells a very different story — one that has been hiding in plain sight. According to current research, approximately 1 in 5 identified Tarlov Cysts are symptomatic, and these cysts can cause life-altering pain, neurological deficits, bladder and bowel dysfunction, mobility issues, and long-term disability.
Yet most frontline clinicians never receive training on Tarlov Cyst Disease, and patients continue paying the price for a knowledge gap they did not create.
That’s why we built something new. Something needed. Something long overdue.
Introducing the Tarlov Cyst Disease Education Kit — a bridge between medical research and real-world clinical care, designed to finally give patients and providers the tools they need to speak the same language.
Why The Tarlov Cyst Disease Education Kit Matters
Tarlov Cyst patients have spent decades trying to prove what countless MRIs, hundreds of published research papers, and thousands of lived experiences already confirm: symptomatic Tarlov Cysts are real, debilitating, and deserving of serious medical attention.
The real barrier has never been the science — it’s been the lack of awareness about the science that should be leading Tarlov Cyst Disease care around the globe.
This kit was created to help change that.
Every piece inside our professionally printed folder is designed to:
Help patients communicate their symptoms clearly
Give clinicians a concise, evidence-based overview of Tarlov Cyst Disease
Clarify when cysts require further investigation
Support informed, compassionate decision-making in the clinic
Replace outdated assumptions with current research and real data
When clinicians understand what they’re looking at — when they see the diagnostic criteria, the comorbidities, the nerve-root involvement, the surgical outcomes, and the prevalence numbers — the conversation tone changes.
Thanks to the TCD Education Kit, dismissal can become understanding. Doubt can become recognition. Patients finally get the care they deserve.
What’s Inside the TCD Education Kit?
Each kit includes carefully designed, evidence-driven tools such as:
✔ Patient + Clinician Educational Materials
Clear, accessible explanations of Tarlov Cyst Disease, symptoms, causes, and validated research.
✔ The Symptomatic Tarlov Cyst Diagnostic Protocol Poster
A concise, professionally printed, visual guide clinicians can reference instantly.
✔ A Referral Checklist + Symptom Log
Tools that ensure your concerns are documented accurately —so nothing is ignored, overlooked, or minimized.
✔ Research Summaries + Comorbidity Information
Evidence that shows the real complexity of Tarlov Cyst Disease, including links to Small and Large Fibre Neuropathy, Treatment Outcomes, CSF pressure disorders, connective tissue disease, and neurological involvement.
Each item in this kit exists because patients asked for it — and because clinicians need access to it.
Why Sharing This Kit With Your Care Team Matters
Patients often feel pressured to educate their own doctors. It shouldn’t be this way — but until translational research helps healthcare systems catch up, tools like this are essential.
When you bring this kit to an appointment, you’re not “challenging” your doctor. You’re giving them what they were never given: credible, organized, reputable information based on proven, peer-reviewed research and global clinical experience.
This is how change begins — one informed conversation at a time.
Your kit becomes a catalyst for:
earlier recognition
better diagnostics
more accurate referrals
fewer dismissals
and improved treatment outcomes
This isn’t just about you, or just one patient. It’s about every patient who comes after you.
Get Your Kit & Help Transform Tarlov Cyst Care
The Tarlov Cyst Disease Education Kit is now available through the Tarlov Cyst Society:
👉 Order Your Kit Here
Your purchase not only gives you tools — it fuels the Society’s mission to educate, advocate, and empower both patients and medical professionals.
Every kit supports:
new educational materials for clinicians
broader awareness campaigns
improved patient resources
and a stronger foundation for the future of Tarlov Cyst care
Together, We Can Change the Story of Tarlov Cyst Disease
No one should have to fight to prove their pain is real.
No one should spend years searching for a doctor who believes them.
And no one should have to advocate alone.
This kit gives patients a voice — and gives clinicians more of a reason to listen.
What is the TCD Education Subscription Service?
For all who order their own TCD Education Kit, you're automatically enrolled in our Subscription Service, which will keep you up to date on the most recent advances in TCD research. This subscription service will provide you with documents that explain how this research could be used to advance care for Tarlov Cyst patients everywhere.
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