#spinalCSFleak #becauseyourduramaters
29.05.2025 19:05 — 👍 0 🔁 0 💬 0 📌 0#spinalCSFleak #becauseyourduramaters
29.05.2025 19:05 — 👍 0 🔁 0 💬 0 📌 0
While I am still “sealed,” I’m doing all I can to raise awareness and funds for this life-altering condition.
The link to my campaign is below, and I’d be so grateful if you could help me reach my goal of $1,000 raised for @spinalcsfleak.org !
secure.qgiv.com/event/durada...
4/4
Our annual fundraiser, duradash®, is well underway!
You can support duradash® by creating your own fundraising campaign, or donating to our general campaign - or even re-sharing our duradash® posts to boost awareness.
bit.ly/duradash25
3/4
Despite our big mission and the incredible amount of work done by the organization, @spinalcsfleak.org is ultimately a very small, patient-led nonprofit. Donations are needed in order to sustain our efforts to support the spinal CSF leak community.
2/4
Did you know that patients with spinal CSF leak have significantly worse measures of well-being than those suffering from HIV/AIDS or cancer?
So many people are suffering immensely, from a condition many individuals don’t even know exists. I was one of them.
1/4
Feb 28th is #rarediseaseday. Spontaneous intracranial hypotension (SIH), secondary to spinal CSF leak, is a rare disorder. SIH affects an estimated 4 in 100,000 people every year—although the condition is still underdiagnosed.
Rare diseases like SIH are widespread, complex, & deeply impactful.
Videos of all 40+ presentations from the 2nd annual Bridging the Gap conference have been uploaded, and can be viewed on our Bridging the Gap 2024 landing page. We've also included transcripts for each talk: spinalcsfleak.org/conferences/...
Thank you to all who joined us for our 2024 conference!
NIH study finds cases of ME/CFS increase following SARS-CoV-2
"Dr. Vernon and her team determined that new incidence cases of ME/CFS were 15 times higher than pre-pandemic levels"
"These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS"
A powerful account of a spinal CSF leak (CSF-venous fistula) misdiagnosed as Alzheimer’s, eventually leading to a dramatic recovery.
Spontaneous intracranial hypotension #SIH, often caused by spinal CSF leak, is debilitating.
www.thefp.com/p/sean-fisch...
I wish people would recognize that being disabled or unhoused is not a moral failing.
So many look down on those in less fortunate situations - yet refuse to acknowledge that they are one bad stroke of luck away from ending up in the same scenario. /4
“Conclusion: Chronic post-dural puncture headache (cPDPH) puts an immense burden of disease on affected individuals, families, and the health care system. Our results imply that cPDPH needs to be considered and should be prospectively studied.” 👏 www.frontiersin.org/journals/neu...
17.12.2024 14:05 — 👍 6 🔁 2 💬 1 📌 0
Hello Bluesky! We are a 501(c)(3) nonprofit health foundation focused on raising awareness, educating, & funding research for spinal CSF leaks. Our mission is to reduce the suffering of anyone affected by intracranial hypotension or spinal CSF leak.
You can learn more about us on our website:
Hello world!
I’m a (recovered) #spinalCSFleak patient & a believer that patient lived-experiences are critical inputs to advancing medical research.
(Not an MD)
Some of my interests:
#SIH
#EDS #hEDS
#autoimmunity
#genetics
#connectivetissue
#MCAS
#chronicillness
#disability
#ADHD
#chronicpain