Aubrey B.
@aubreybolan.bsky.social
Recovered from #spinalCSFleak 🧠💧
Support @spinalcsfleak.org if you can! 💜
Support @spinalcsfleak.org if you can! 💜
Pinned
Aubrey B.
@aubreybolan.bsky.social
· May 29
duradash® 2025
Join me as I raise funds for spinal CSF leak research, awareness, and education in this virtual challenge fundraiser in support of the Spinal CSF Leak Foundation.
secure.qgiv.com
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
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
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
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
duradash® 2025
Join me as I raise funds for spinal CSF leak research, awareness, and education in this virtual challenge fundraiser in support of the Spinal CSF Leak Foundation.
secure.qgiv.com
May 29, 2025 at 7:06 PM
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
So many people are suffering immensely, from a condition many individuals don’t even know exists. I was one of them.
1/4
May 29, 2025 at 6:56 PM
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
So many people are suffering immensely, from a condition many individuals don’t even know exists. I was one of them.
1/4
Reposted by Aubrey B.
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.
Rare diseases like SIH are widespread, complex, & deeply impactful.
February 28, 2025 at 5:34 PM
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.
Rare diseases like SIH are widespread, complex, & deeply impactful.
Reposted by Aubrey B.
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!
Thank you to all who joined us for our 2024 conference!
January 28, 2025 at 6:28 PM
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!
Thank you to all who joined us for our 2024 conference!
Reposted by Aubrey B.
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"
"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"
NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2
ME/CFS is a complex, serious, and chronic condition that often occurs following an infection.
www.nih.gov
January 13, 2025 at 11:15 PM
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"
"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...
Spontaneous intracranial hypotension #SIH, often caused by spinal CSF leak, is debilitating.
www.thefp.com/p/sean-fisch...
My Mom Was Diagnosed with Alzheimer’s. Then She Got Better.
My family experienced a miracle last year. It began with a tragedy.
www.thefp.com
January 5, 2025 at 1:55 PM
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...
Spontaneous intracranial hypotension #SIH, often caused by spinal CSF leak, is debilitating.
www.thefp.com/p/sean-fisch...
Reposted by Aubrey B.
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
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
December 21, 2024 at 3:09 AM
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
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
Reposted by Aubrey B.
“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...
Frontiers | Chronic post-dural puncture headache–a serious and underrated complication following lumbar puncture: a cohort study
www.frontiersin.org
December 17, 2024 at 2:05 PM
“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...
Reposted by Aubrey B.
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:
You can learn more about us on our website:
Spinal CSF Leak Foundation - Home - Spinal CSF Leak Foundation
Intracranial hypotension due to spinal CSF leak is an important and under-diagnosed cause of new onset headache.
spinalcsfleak.org
November 16, 2024 at 4:35 PM
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:
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
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
December 5, 2024 at 4:28 PM
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
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