Right Turn: Raising awareness about spinal cerebrospinal fluid (CSF) leak

Author: Stacey Johnson, 03/03/17

Have you heard of spinal cerebrospinal fluid (CSF) leak? No? That’s why the Spinal Cerebrospinal Fluid (CSF) Leak Foundation, established in June 2014, is holding its first educational campaign (Feb. 27-March 3, 2017) to raise awareness of spinal CSF leak, an underdiagnosed cause of headaches that are easily treated and cured. If you suffer from frequent headaches and/or migraines and notice that they are worse when you are sitting or standing (#uprightheadache), pay attention to this video!

 

Spontaneous intracranial hypotension is also known as spontaneous spinal CSF leak and it is considered a rare disorder, meaning that fewer than 200,000 people in the U.S. have it, or 1 in 2,000 in Europe, or 1 in 12 Canadians, but due to the fact it is rarely diagnosed promptly, the numbers could be much higher. The National Organization for Rare Disorders includes spontaneous intracranial hypotension in its database. You can read more about it here.

February 28th was Rare Disease Day. The event has been growing in size and reach since it launched in 2008. And so has the drug market that caters to it. According to Drug Discovery & Development magazine, “sales of orphan drugs are expected to grow at an annual rate of nearly 11 percent per year to about $176 billion in 2020, compared with 4 percent for drugs treating larger populations.”

Advances in technology and R&D, along with greater knowledge of genetics – frequently the cause or a component of rare diseases – are reasons why more pharma companies are developing treatments for rare diseases. Said Andrew Robbins, chief operating officer of Array BioPharma, to Drug Discovery & Development: “As our understanding of human biology continues to improve, small and large companies have the ability to create innovative products that can directly target these genetic disorders.”

So what is the connection to regenerative medicine? Well, for now it is a small one, but that could change over time. Dr. Wouter Schievink, an expert on this disorder, has stated publicly that “new approaches to epidural patching [including] platelet rich plasma or MSCs” are being evaluated, although treatments using MSCs have not yet begun at Cedars-Sinai Medical Center in California, where he is based.

In the meantime, let friends and family members who suffer regularly from headaches or migraines know that spinal CSF leak could be causing that pain. Speaking to a doctor and seeking treatment, that is already available, could make those headaches go away.

Our regular feature, Right Turn, appears every Friday and we invite you to submit your own blog to info(at)ccrm.ca. We encourage you to be creative and use the right (!) side of your brain. We dare you to make us laugh! Right Turn features cartoons, photos, videos and other content to amuse, educate and encourage discussion.

As always, we welcome your feedback in the comment section.

 

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Stacey Johnson

Stacey Johnson

For almost 20 years, Stacey has been providing strategic communications counsel to government, corporate, technology and health organizations. Prior to that, Stacey was at the CTV Television Network, first as a researcher, then as a story producer for “Goldhawk Fights Back,” a special ombudsman segment that aired weekly on the National News and Canada AM. Before joining CCRM as the Director, Communications and Marketing, Stacey was the Director of Communications for the Canadian Arthritis Network. Stacey is editor of Signals. You can follow Stacey on Twitter @msstaceyerin.
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