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Foreword

This glimpse into Karen’s own writings offer hints of the depth of her suffering, yet like many with chronic disabling illness, much of what she endured was not openly shared. Sadly, devastatingly, it is only after her suicide that a greater awareness of what she endured has come to light.

I never met Karen. I became aware of her story after she ended her own life. Her husband, Bob, has been tireless in raising awareness about the health issues from which she suffered.

She was being treated for spinal CSF leaking. My understanding is that she endured disabling symptoms for decades before a diagnosis. At times her suffering was trivialized or dismissed, at other times, she was met with compassion in the medical world. She learned to navigate the waters of our troubled health care system with variable degrees of success, like so many with chronic illness.

For those with spinal CSF leaking, despite frequent profound disability, the correct diagnosis remains elusive for months, years, and even decades, as in Karen’s case. Even after a diagnosis is made, timely access to appropriate diagnostics and treatments is often far from optimal. The degree of suffering and disability is too often underestimated. The large gap between actual care and optimal care is what motivated me to co-found Spinal CSF Leak Foundation. By raising awareness, we hope to lessen such suffering. We can all learn from Karen’s experience. We need to.

Connie Deline, MD, Co-founder, Spinal CSF Leak Foundation

Contents | Start | End | Previous: About This Book | Next: Karen not knowing she was writting this book