Thanks for dropping by to learn more about us!
This foundation was formed by spinal CSF leakers FOR spinal CSF leakers because, as a relatively uncommon condition, sufferers often endure lengthy delays before a correct diagnosis. That delay may span months, years and even decades. Patients often need to spend much of their time flat in bed because the severe headache and other symptoms are usually very positional. For a condition that is often quite disabling, yet often TREATABLE, this needs to CHANGE! Even after the diagnosis is made, timely access to the most appropriate diagnostic testing and treatments can be challenging.
We feel that greater awareness amongst medical care providers as well as the general public will improve the situation.
More research into refining the diagnostic testing and treatments is also needed.
To learn more about spinal CSF leaking, peruse our website. A good place to start is here: Overview
With funding, we hope to accelerate our efforts to educate.
We are working on more educational resources on our website.
Webinars and a conference are also being planned.
We are working on specific educational needs for physicians, including EM physicians, primary care physicians and neurologists.
We are soliciting input from top clinicians regarding research priorities so that we can help fund those projects.
Help us to speed things up! Spinal CSF leaks are often TREATABLE.
Prompt diagnosis offers hope that the the suffering and disability might be lessened!
> Help to raise awareness.
Make a video (see suggestions below).
Send people here to our website to learn more.
We have awareness items available now and will have more items soon. These can spark up conversations with those unfamiliar with spinal CSF leaking.
> Donations are tax-deductible and WILL help us in our mission.
If you prefer to mail a donation check, you may make a check payable to “Spinal CSF Leak Foundation”
Spinal CSF Leak Foundation
8840 North 7th Avenue
Phoenix, AZ 85021
Make an awareness video:
A short video message can speak volumes about how disabling the symptoms from spinal CSF leaks can be.
Because the headache and other symptoms are almost always much worse when upright, being upright can be very difficult.
Some individuals have made videos showing themselves flat on the floor, on a bench or on a bed because flat is the position in which spinal CSF leakers feel best.
Use the hashtag #laydownforcsfleaks
You may wish to include a link to this page: spinalcsfleak.org/?p=912