May 16 is declared as the international day to raise awareness for the rare disease Tarlov Cysts. The “Association of Tarlov Patients in Bulgaria – Treatment Without Borders” actively participates in the campaigns.
Since Tarlov Cyst Disease (TCD) are not widely known or understood by both patients and the medical community, many people with TCD remain undiagnosed despite experiencing symptoms.
Considering that Tarlov Cyst Disease is a rare condition where sacs filled with cerebrospinal fluid form in the nerve roots of the spinal column, most commonly at the base, and,
Considering that Tarlov Cysts can be small and asymptomatic, but as they grow, they can compress nerves leading to chronic pain, numbness, altered sensation, and in severe cases, weakness in the legs, loss of control over the bladder or bowels, and neurological impairment, and,
Considering that individuals with connective tissue disorders are more likely to be diagnosed with Tarlov Cyst Disease, and,
Considering that symptoms of Tarlov Cyst Disease often overlap with other medical conditions, making misdiagnosis or delayed diagnosis more likely, and,
Considering that treatment for Tarlov Cysts focuses on symptom management, with some patients finding long-term relief through surgical intervention, and,
Considering that further research is needed for a better understanding of the underlying mechanisms of the disease and to develop more effective and less invasive treatment options,
Tarlov Cyst Disease Awareness Day is a collective effort of warriors living with TCD, striving to raise awareness and support by advocating, educating, and affirming the disease.
Show you care about rare diseases by joining efforts to:
- Increase awareness of this rare disease so patients receive accurate and appropriate diagnoses.
- Empower patients and families to advocate for themselves.
- Amplify research efforts.
- Increase support in every community for those living with TCD.
- Enable people living with TCD to start conversations about the challenges of living with the disease.
- Direct people to available resources to assist with diagnosis and treatment.
YouTube Channel of the Association of Tarlov Patients in Bulgaria – Treatment Without Borders
Association’s Website: http://tarlov-bg.eu/
