In 2013 I woke up with what I now know to be a spinal CSF leak. There is a common misconception that this is “just a headache” - but it is more like a full body syndrome. Unlike many conditions that ebb and flow - those with spinal CSF leaks do not experience a day without symptoms. Any time I was upright - I had an excruciating headache & nausea. I also had chronic vertigo, fatigue, facial numbness, cognitive struggles, and double vision. This condition is relentless. There are no medications or at-home treatment. The only relief is to lie flat. 

I was able to self-diagnose myself pretty quickly, but was not able to receive a proper diagnosis for 3.5 years. In this time I had various trips to the ER, ENTs, neurologists, all to no avail. I couldn’t shake the generic ‘migraine’ diagnosis and was repeatedly told that my symptoms were caused by anxiety. I finally found a provider that believed in me, that eventually led to me going to a specialty leak centers. After a collective 8 years of symptoms and 10 procedures, it seems I may be finally *fixed*! I have been sealed for 5 years now.  

It is difficult to overstate how debilitating CSF leaks are. Every moment you’re upright is  excruciating and disorienting. The isolation of having a CSF leak is one of the hardest elements to cope with. Most patients have to live life all while being confined to their bed, missing out on life’s biggest moments. It can make your world feel unbearably small, with so much of life slipping by while you’re stuck on the sidelines. Unfortunately, many patients face a similar diagnostic journey and endure debilitating symptoms for months, years, or even decades. During that time, they often go untreated and unheard.

That’s why the work of the Spinal CSF Leak Foundation is so critical. They’re the leading nonprofit in this space, funding research that directly impacts patients and running major initiatives to educate physicians and close the diagnostic gap. They are launching an international patient registry which will help researchers better understand the condition, identify patterns in diagnosis and treatment, and accelerate progress toward better care for patients worldwide. They also hold the annual Bridging the Gap Conference, a unique format that gives both patients and providers an equal voice. I am grateful to have had the privilege of speaking at the 2024 conference, and you can hear my full story here: https://www.youtube.com/watch?v=bSFJ4i_7l44

Donating to the Foundation is directly helping the innumerable patients suffering from this condition, and is one of the ways we can show up in a meaningful way. Any amount is greatly appreciated. Thank you so much!!!