Today we would like to recap #leakweek 2018
Our primary goal of Leak Week has been to raise awareness about spinal cerebrospinal fluid (CSF) leak so that more patients might be correctly diagnosed and treated.
We featured 3 very informative expert interviews:
• Wouter Schievink, MD, neurosurgeon at Cedars-Sinai
• Stephen Silberstein, MD, headache neurologist at Jefferson Headache Center
• Linda Gray-Leithe, MD, neuroradiologists at Duke University Medical Center
We also featured interviews with 3 patients:
• Lianne
• Andrea (who also wrote a book about her experience)
• Diane
We were also fortunate to have 3 top experts available for LIVE Ask-the-Expert sessions on Facebook, which are now available for replay HERE.
A huge thank you to House Representative Harry Readshaw of Pittsburgh, Pennsylvania for introducing House Resolution 671 marking “Spinal CSF Leak Awareness Week” in Pennsylvania.
We are also grateful to Michelle Stilwell, a Member of the Legislative Assembly in British Columbia spoke to the Legislature in Victoria about spinal CSF leak.
We have been grateful for the many patients who have shared their stories with us on Facebook, demonstrating the wide range of experiences and thereby elevating awareness very substantially.
Many have shared their photos wearing PURPLE and illuminated their home or offices in PURPLE lights. Lots of purple hair and #leakweek profile frames were shared as well!
Numerous landmarks across North America shone PURPLE in recognition of #leakweek, for which we are so very thankful.
All of this can CERTAINLY have an IMPACT on improving the awareness and understanding of spinal CSF leak. This means that MORE patients can be diagnosed more quickly and access treatment more quickly.
IMPORTANT INITIATIVES we are working on:
• We are participating in several exciting projects that are underway:
– The American Headache Society has gathered a panel of experts to collaborate on the development of guidelines for the diagnosis and treatment of intracranial hypotension.
– The Ehlers-Danlos Society established a Comorbidities Coalition of several organizations to seek a better understanding of the associations of several disorders in patients with Ehlers-Danlos Syndrome
– Collaborating with a number of other organizations to increase awareness and educational efforts
• Our first research grant to fund a small project at Duke was approved recently, with plans to allocate more $$ to research this calendar year.
• The planning for the second annual Intracranial Hypotension Symposium in October 2018 is well underway.
• Just this week, Dr. Deline presented the clinical rationale for proposed diagnostic coding revisions in Baltimore, after working with a team of experts on the project since last June.
HOW YOU CAN HELP:
Please continue to support our shared cause by:
• sharing educational content and resources
• volunteering
• donating
We want to improve the lives of those affected by spinal CSF leak by:
• broadening our educational efforts to a wider range of healthcare professionals
• more awareness efforts, such as more patient stories and more expert content
• continuing important collaborations with other organizations
• funding more research