Nick Stevens: A Journey to a Diagnosis

Nick Stevens: A Journey to a Diagnosis

Nov 20, 2023 | Conference, Patient Stories

Nick Stevens (he/they) shared their decade-long search for proper diagnosis and treatment for spinal CSF leak at the inaugural Bridging the Gap conference on November 11, 2023.   Nick’s story is, overall, one of remarkable resilience as they battled through years...
In conversation with Dr. Mark Mamlouk

In conversation with Dr. Mark Mamlouk

Oct 23, 2023 | Expert Interview

Spinal CSF Leak Foundation in conversation with Dr. Mark Mamlouk   Dr. Mamlouk took some time to discuss with us his most recent publication, “Factors Predictive of Treatment Success in CT Guided Fibrin Occlusion of CSF-Venous Fistulas, a Multicenter...
Spinal CSF Leak and Dysautonomia

Spinal CSF Leak and Dysautonomia

Oct 1, 2023 | News

Dysautonomia awareness month October is Dysautonomia Awareness Month. Dysautonomia (from “dys-,” meaning bad or difficult, and “autonomic,” meaning occurring involuntarily or automatically) is the name for range of conditions that affect the...
International Ataxia Awareness Day

International Ataxia Awareness Day

Sep 25, 2023 | News

  September 25 is International Ataxia Awareness Day. Ataxia, a degenerative neurological disorder that affects movement and coordination, can be a rare symptom of intracranial hypotension due to spinal CSF leak. Ataxia literally means “without...
World FTD Awareness Week

World FTD Awareness Week

Sep 23, 2023 | News

This week is World FTD Awareness Week. FTD, also known as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease, is a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. It is the most...
Patient Stories: Anna

Patient Stories: Anna

Sep 20, 2023 | Patient Stories

Anna’s spinal CSF leak story Spinal cerebrospinal fluid (CSF) leak is often confused with other diagnoses. Like so many patients, Anna was told her symptoms were due to sinus infection or migraine. Here is her story.   A gradual beginning How old were you when...