We are very appreciative of Senator John P. Blake and his staff in advancing Pennsylvania Senate Resolution Number 13 to proclaim the week of February 26 to March 4, 2017 as Spinal CSF Leak Awareness Week in the Commonwealth of PA. The resolution was adopted on January 23, 2017.
See Senator Blake’s press release.
This Awareness Week is our first “Leak Week”, an important week-long event focused on elevating the profile of spinal cerebrospinal fluid (CSF) leak, also known as intracranial hypotension. Patients often suffer for months or years without the correct diagnosis, yet this disorder is curable in many cases. Greater awareness is the key to shortening delays to the correct diagnosis and treatment. The week overlaps Rare Disease Day on February 28, 2017, an international day of awareness for all rare disorders.
The most common symptom is a headache that is worse when upright, although there are usually a number of other symptoms, with each patient having a unique set. Our page on Symptoms lists common and uncommon symptoms and complications.
Health care professionals face a number diagnostic challenges with this disorder that contribute to diagnostic delays:
- low familiarity as a less commonly encountered disorder
- considerable variability in presenting signs and symptoms that can mimic other disorders
- challenges associated with the performance and interpretation of diagnostic imaging
Once (and IF) the diagnosis is made, testing and treatments can help many, but not all, patients to retrieve a more normal life once again.
We have a number of efforts planned in association with Leak Week to educate and raise awareness about spinal CSF leak, including:
- a video animation to explain the basics of what it is, to be released during Leak Week
- expert Q & A sessions on Facebook LIVE during Leak Week
- daily educational content on our blog and on social media
- promotion of important resources
- landmark building illuminations across North America during Leak Week
- volunteer help with raising awareness in local communities
By the passage of SR-13, Senator Blake has raised the profile of spinal CSF leak and our awareness week called Leak Week. We are grateful to Senator Blake, his staff and his colleagues in the Senate of PA for the passage of this proclamation. This amplifies our efforts to offer hope of reduced suffering to patients, both those diagnosed and not yet diagnosed.
#LeakWeek #UprightHeadache #spinalCSFleak