I’m thrilled to be participating in duradash® 2025, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 25–June 7, 2025. The duradash® event aims to raise awareness and funds in support of spinal CSF leak research and education, so that more patients living with this under-diagnosed and disabling neurologic disorder are able to receive correct and timely diagnosis and treatment.

The virtual challenge aims for a total of 150 minutes of any activity, to be done at any time, anywhere. The theme is to "start where you are" - to meet people at their current level of ability and encouraging activity meaningful for the individual. I aim to walk for 150 minutes over the course of the event!

I’m passionate about this cause and need your help! Every donation—big or small—helps me reach my fundraising goal and directly impacts research and funding for this under-diagnosed, debilitating condition.

My story: 

Due to an unfortunate accident, I suffered from a CSF Leak and was unable to complete my medical training as a physician as a result. As CSF Leaks are considered 'rare' and under-recognized ( especially in Asia, where it happened for me), there were limited diagnostic and treatment options. My journey has been nothing short of harrowing, including suffering left-sided hearing loss which has thankfully resolved and being bed-bound for 1 year due to severe postural headaches.

CSF, otherwise known as brain / spinal fluid, surrounds the brain and spinal cord to protect them and keep the brain buoyant. In a CSF Leak, there is typically a hole / tear in the dura mater i.e. tough outer membrane that covers the brain and spinal cord, so CSF leaks out via gravity when patients are in an upright position. The normally buoyant brain can sag downwards along with associated pain-sensitive structures, causing severe pain that can occur within 15 minutes of being upright.

While the postural headaches may diminish over time, patients still end up living limited 'half-lives' due to other debilitating symptoms such as brain fog, nausea, hearing changes like tinnitus, neck pain, dizziniess, vision changes and more neurological symptoms.

Like many patients, the CSF Leak changed my life completely: Besides the physical condition, this experience led to a loss of my self-confidence, hopes, dreams and even identity.  While I felt invincible as a physician, I felt completely invisible as a patient. I believe nothing quite prepares one for being chronically ill – For me, the change was from working 80h-work weeks in medical training to being completely flat on my back and dependent on my loved ones for my Activities of Daily Living ( ADLs) such as toileting and showering. This medical condition brought me to my knees, I never imagined one could feel such pain and suffering, but it also showed me the resilience we can have as human beings. As I reflect on my journey, a beautiful quote written by Joyce Meyers has rang true: " Each of us must decide whether we will reach deep inside and find the courage to press past fear, mistakes, mistreatment at the hands of others, seeming injustices, and all of the challenges life presents".

My life motto has always been: “ To live life to the fullest”. For a period of time, it meant simple things like completing a meal without lying down or feeling uncontrollable nausea and even taking a walk outside. By the grace of God, I no longer live this life anymore. Since I re-located to the United States, I thankfully have access to diagnostic and treatment options previously unavaiable to me. However, there are many other parts in the world where patients continue to suffer endlessly, due to the under-recognition of CSF Leaks and resulting lack of access to care. I am sharing some of my story here, in hope to raise awareness for this invisible disability. Your donations will mean a lot to me and the CSF Leak community, including the many others out there still waiting for answers / treatment.

Here's how you can help:

• Donate: Contribute whatever you can. No amount is too small!
• Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
• Stay Engaged: Check back periodically for updates on my progress to my activity goal! Share my accomplishment far and wide!

Thank you for standing by me in this effort. Your support means the world to me!

With much love,

Pamela