LeakWeek 2023 Day seven: Research
As we wrap up this year’s Leak Week, today is all about looking ahead—to what we plan to do, what we hope to do, and what we need to do to advance understanding of spinal CSF leak and improve outcomes for everyone affected by it. As you can see in the first image,...
Partnering with NORD® to create a patient registry
Spinal CSF Leak Foundation is proud to announce that we are partnering with NORD® to create a registry for spinal CSF leak patients. The National Organization for Rare Disorders is an independent nonprofit that built its IAMRARE® online registry platform as...
LeakWeek 2023 Day Six: Treatment
Spinal CSF Leak Treatment Treatment for spinal CSF leak varies from conservative measures to surgical procedures. Some patients have symptoms that resolve spontaneously in a matter of hours, days, or weeks without ever seeking or requiring medical care. However, some...
LeakWeek 2023 Day Five: Diagnosis
Diagnosis The word “diagnosis” means “discerning or distinguishing” and comes from an even older Greek word that meant “to know thoroughly” or “know apart from another.” Which is fitting, as one of the most challenging aspects of diagnosing a spinal CSF leak is...
The Sky’s the Limit: Advice from Zack and Anthony
In our recent story, “The Sky’s the Limit: A Friendship Reaches New Heights,” we met Zack and Anthony, whose friendship only strengthened in the face of Zack’s battle with spinal CSF leak. After talking with them about Anthony’s Ironman...
Patient Stories
