This is Day 1 of #leakweek 2018 – because your dura maters℠
Spinal CSF Leak Awareness Week or Leak Week is March 4-10, 2018.
Spinal cerebrospinal fluid (CSF) leak is an under-diagnosed cause of disabling daily headache with other neurological symptoms and complications that can happen to anyone. A spinal CSF leak is treatable, BUT ONLY if the correct diagnosis is made. The tagline – because your dura maters℠ – highlights the TREATABLE aspect of this often very disabling neurological disorder. Many patients, although not all, can be cured.
Could YOUR daily headache be due to a spinal CSF leak? Could you be cured?
Because spinal CSF leak is unfamiliar to most physicians, it is often misdiagnosed. Patients can suffer for months, years or decades with the wrong diagnosis and the wrong treatments. Medications rarely help. The most common symptom of headache is often much worse when upright, so patients may have limited ability to function normally while upright. The degree of DISABILITY varies from mild to profound.
Our primary goal of Leak Week is to raise awareness so that more patients might be correctly diagnosed and treated.
Please share our #leakweek 2018 factsheet
What is the dura mater?
The “dura mater” is the tough layer around the brain and spinal cord that normally holds in the cerebrospinal fluid (CSF) or brain-spinal fluid.
The brain and spinal cord need this special watery fluid to function normally. When there is a hole or defect in the spinal dura mater, the fluid leaks out resulting in a low fluid level. This causes a range of symptoms and complications that can be very disabling.
>>> Later today, Dr. Wouter Schievink, Cedars-Sinai neurosurgeon and spinal CSF leak expert, will be sharing his expertise on spinal CSF leak and teach us more about the dura mater. Find out more about why the dura matters!
More to come this week
• interviews with other experts
• featured patient experiences
See details below about
• landmarks shining purple all week
• Wear PURPLE Day
• 3 Ask the Expert sessions LIVE on Facebook on Thursday and Friday
• how to share YOUR story (that we may feature later with your consent)
Remember that Thursday March 8 is Wear Purple Day!
Help us to raise awareness about #spinalCSFleak
Be sure to attend Ask the Experts sessions LIVE on our Facebook page
Share your story
During #leakweek 2018, because your dura maters℠
why not share your story to help raise awareness?
Here are two suggested ways to do so:
1) Share your written story on social media and post on the Spinal CSF Leak Foundation Facebook page. Include a photo if you like.
2) Share a short video (max 90 seconds) of your story on social media. Post on the Spinal CSF Leak Foundation Facebook page.
In either method of sharing your story, add these hashtags to your post:
#leakweek #becauseyourduramaters #spinalCSFleak