.png)
Behind The Tarlov Cyst Society: The Story Behind the Organization
- 5 days ago
- 4 min read
When people visit the Tarlov Cyst Society website, they often see educational articles, research updates, physician information, patient resources, and advocacy campaigns. What they don't always see is the person working behind the scenes to help make it all happen—or the questions that guide every decision we make.
As the Tarlov Cyst Society Founder, I often ask myself, "Who am I to be sharing this information?"After all, I'm not a doctor. I'm not a neurosurgeon. I'm not a geneticist. What I am is a patient and a journalist. Like many people living with a rare disease, I became a researcher because I had no other choice.
How the Tarlov Cyst Society Founder Became an Advocate
My journey began with my own diagnosis of Tarlov Cyst Disease.
At the time, reliable information was difficult to find. Many healthcare professionals had never heard of the condition. Patients were being told their cysts couldn't cause symptoms, while many of us were living with debilitating pain, neurological symptoms, bladder and bowel dysfunction, and significant disability. Like countless rare disease patients before me, I started asking questions.
I read medical studies.
I contacted specialists.
I joined patient communities.
I learned everything I could about Tarlov Cysts, connective tissue disorders, genetics, and chronic neurological conditions.
What started as a search for answers for myself slowly became something much bigger.
As more patients reached out, I realized these problems weren't unique to me. Patients around the world were facing the same barriers to diagnosis, treatment, and support. That's why the Tarlov Cyst Society was born.
Behind the Tarlov Cyst Society: a Patient-Led Rare Disease Charity
One thing I want people to understand is that the Tarlov Cyst Society does not exist because I believe I have all the answers. In fact, the opposite is true. Everything we publish on our website begins with questions.
What does the research actually say?
What do we know?
What don't we know?
What are patients experiencing?
Where are the gaps in care?
As a patient-led organization, our responsibility is not to replace medical advice. Our responsibility is to gather information, review evidence, speak with experts, and help make complex information easier for patients and families to understand.
When we create educational materials, physician resources, blog posts, and awareness campaigns, accuracy matters.
I rely on medical literature, expert opinion, healthcare professionals, and patient experiences to help guide our work. I also recognize that medicine evolves and that new research can change our understanding over time.
That is why transparency, evidence, and ongoing learning remain at the heart of everything we do.
I won't pretend that responsibility doesn't weigh on me sometimes. Every article we publish, every resource we create, and every piece of information we share has the potential to influence someone's understanding of their condition. That is why I continually review research, seek expert input when possible, and remain willing to correct information as new evidence becomes available. In rare disease advocacy, learning never stops.
Why This Work Matters
Over the years, I have spoken with thousands of Tarlov Cyst patients from around the world.
I've listened to stories of delayed diagnosis.
I've spoken with people who lost careers, mobility, financial security, and relationships because they could not access proper care.
I've also seen hope.
I've watched patients find answers, including multiple rare disease diagnoses on top of their Tarlov Cyst findings.
I've watched lives improve after treatment, but I've also seen others unable to recover regardless of the treatments they were able to access.
I've watched strangers become friends and support one another through some of the most difficult moments of their lives.
Those experiences are what continue to drive this work forward.
The Tarlov Cyst Society is not guided by one person's expertise. It is guided by evidence, collaboration, lived experience, and a shared belief that patients deserve better.
Join Me Behind the Scenes
Running a rare disease charity requires more than passion.
Behind the scenes, the Tarlov Cyst Society requires research, education, advocacy, outreach, website development, patient support, awareness campaigns, and countless hours of work behind the scenes.
If you believe patients deserve access to reliable information, compassionate support, and greater awareness of Tarlov Cyst Disease, I invite you to join us.
You can help by:
Becoming a member
Sharing our educational resources
Volunteering your skills and experience
Participating in our patient initiatives
Fundraising to support our growth
Making a charitable donation to support our mission
Every contribution helps us continue the work of educating, advocating, and improving the lives of people affected by Tarlov Cyst Disease.
Together, we are building a future where patients are seen, heard, believed, and supported.
Although we've now been advocating for patients for more than 15 years, in many ways we're just getting started. There is still so much work to do, so much awareness to build, and so many patients who need to know they are not alone.
If you'd like to join us as a member, visit our homepage and register
If you'd like to join us as a volunteer we'd love to hear from you!
If you have any other questions or inquiries reach out to us anytime.
Comments