CSF Leak Awareness Ireland

Raising awareness of cerebrospinal fluid (CSF) leaks * Spontaneous Intracranial Hypotension #SIH / CSF-venous fistula *Iatrogenic Leaks / Chronic PDPH

[CSF Leak Awareness Ireland @csfleakaware]

Upright headache? Think CSF Leak... watch this video to find out more: Upright Headache - my spinal CSF leak https://t.co/asQcwWu7RF via @YouTube

[CSF Leak Association @csfleakuk]

This Father’s Day, we’re highlighting a reality many families face.

CSF leaks don’t just affect individuals—they impact their ability to be present as parents. Behind the smiles are pain, resilience, and determination.

Help us raise awareness 💙
#FathersDay #CSFLeak

[WouterSchievink @WouterSchievink]

*OPEN ACCESS* In this comprehensive translation study combining human genetics, functional assays, and mouse models we showed that FBN2 mutations increase susceptibility to spontaneous CSF leaks. Science has entered our field @spinalCSFleak @issclsociety https://t.co/SIdczCBu7o

[Spinal CSF Leak Foundation @spinalCSFleak]

To quantify the barriers to care spinal CSF leak patients face, the Foundation collaborated with @AndrewCallenMD and @DanielM737 on a patient survey and paper.

We are thrilled to share that it has been accepted by @TheAJNR!

Abstract here: https://t.co/UgsJV8Jl9z

[Spinal CSF Leak Foundation @spinalCSFleak]

At the same time, research has continued to increase exponentially. From isolated case reports on SIH in the 1980s to a robust international research field, to PDPH & cPDPH generating substantial investigation into prevention & treatment approaches, we have cause for hope.

[Spinal CSF Leak Foundation @spinalCSFleak]

As awareness grows & consensus guidelines help clinicians recognize the condition sooner, diagnosis is occurring earlier. Access to specialist care is expanding through national & international collaboration, & patient voices are being heard &validated through rigorous research.

[Spinal CSF Leak Canada Charitable Organization @SpinalCSFCanada]

𝐅𝐨𝐫 𝐲𝐞𝐚𝐫𝐬, 𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬 𝐡𝐚𝐯𝐞 𝐝𝐞𝐬𝐜𝐫𝐢𝐛𝐞𝐝 𝐭𝐡𝐞 𝐝𝐞𝐯𝐚𝐬𝐭𝐚𝐭𝐢𝐧𝐠 𝐢𝐦𝐩𝐚𝐜𝐭 𝐨𝐟 𝐬𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐥𝐞𝐚𝐤𝐬 𝐍𝐨𝐰, 𝐭𝐡𝐞 𝐞𝐯𝐢𝐝𝐞𝐧𝐜𝐞 𝐢𝐬 𝐜𝐚𝐭𝐜𝐡𝐢𝐧𝐠 𝐮𝐩.
#SpinalCSFLeakAwarenessWeek

[CSF Leak Association @csfleakuk]

💙 Founder David Baldwin's story began with personal experience and grew into a movement to support thousands of others.

💙 Together, we’ve made progress—but there is still more to do.

👉  https://t.co/Kt1KbsriUD

👉 Please Share to help us continue to support patients

[CSF Leak Association @csfleakuk]

💙 One day, Linzi was a fit, active mum - the next, she couldn’t sit upright.

She was told it was “just headaches.”But as her symptoms worsened — dizziness, tinnitus, nausea — she knew something wasn’t right.

👉️ Read Linzi’s story: https://t.co/d6i7n9WTCq

[AJNR @TheAJNR]

"A subset of postdural puncture headaches (PDPH) persist despite conventional epidural blood patches (EBPs). This report describes the CT fluoroscopy–guided circumferential EBP, a technique that achieves 360° coverage of patching material around the thecal sac."

[AJNR @TheAJNR]

"Circumferential Epidural Patch for Postdural Puncture Headache: A Technical Report"

https://t.co/98eHcbLqiJ

[Spinal CSF Leak Foundation @spinalCSFleak]

We have 59 landmarks in 33 states lighting up this leakweek! Thank to all who have shared your photos from around the country.

Shine bright💜

[CN Tower / Tour CN @TourCNTower]

Tonight the #CNTower will be lit purple for Spinal CSF Leak Week Awareness

Ce soir, la #TourCN sera illuminée en violet pour la Semaine de sensibilisation à la fuite de liquide céphalo-rachidien

[CSF Leak Association @csfleakuk]

Congratulations to the team at WashU Medicine and WashU Neurology on this important work. This research leads the way for non-invasive imaging to locate CSF leaks—reducing the need for invasive procedures and marking a significant step forward for both the field and for patients.

[Spinal CSF Leak Canada Charitable Organization @SpinalCSFCanada]

💜 Last night, June 2, 2026, the Esplanade Riel Bridge in Winnipeg was shining purple in recognition of #SpinalCSFLeakAwarenessWeek.

Thank you, the city of winnipeg, for your support, and Corinne Rachel for capturing these beautiful photos.💜

[CSF Leak Association @csfleakuk]

💙 “A diagnosis changed everything.”

It wasn’t until a second opinion in Spain, supported by advanced imaging, that the real cause was finally found:a spinal CSF leak.

👉 Read Ana’s story:   https://t.co/b19L4OiU7g

[Spinal CSF Leak Canada Charitable Organization @SpinalCSFCanada]

We are thrilled to share that this year’s #SpinalCSFLeakAwarenessweek collaboration has grown from 3 organizations to 5. Together, we're raising awareness, promoting earlier diagnosis, and supporting those living with this highly disabling neurological condition.

[AJNR @TheAJNR]

"Locating Spinal Leaks in Spontaneous Intracranial Hypotension: How Many Dynamic Myelographies Does It Take?"

https://t.co/qATpSch9Vt

@TDobrocky

[AJNR @TheAJNR]

"Digital subtraction myelography is a safe and effective diagnostic technique for pediatric CSF leaks, enabling precise localization critical for targeted treatment. Incorporating DSM into the diagnostic workflow may improve outcomes for children with intracranial hypotension."

[AJNR @TheAJNR]

"Under Pressure: Advancing the Diagnosis of Pediatric CSF Leaks with Digital Subtraction Myelography"

https://t.co/aUahQqDqW1

[Peter Kranz @PeterGKranz]

@TheAJNR My 🔥hot take:
If you aren’t seeing rebound intracranial hypertension after TVE, it’s because you either aren’t embolizing fistulas or you aren’t asking about it