Leisha Jones shared her thoughts with us about how she plans to participate in this year’s #duradash. Visit her page to see updates on her progress and give your support!
Leisha’s spinal CSF leak was surgically repaired about 7 years ago, after taking over a year to diagnose. She continues to live with post-leak symptoms, including intracranial pressure fluctuations.
What are you doing for #duradash?
The keyword for my #duradash is stamina. Because of the pandemic, I stopped going to the gym, where my trainer had helped me adapt exercises for post–spinal CSF leak living. This more sedentary physical status, combined with the collapsing of home life and work life (crazy Zoom headaches!) and extra mom duties, meant that I was struggling to keep everything going and not practicing the self-care I needed. For #duradash, I want to make my life more sustainable by gradually adding movement, word-count goals for writing projects, and one self-care moment every day. My hope is to engender a gentle post–COVID vaccine restart and form new habits as I raise money for this important organization.
What to you want people to know about spinal CSF leak?
That horizontal life is REAL. And really hard. One of the most frustrating obstacles to finding spinal CSF leak resolutions, aside from the chokehold the insurance/pharmaceutical industries maintain over people’s health and wellbeing in the US, are those sexist practices of medicine that relegate women’s bodies and medical narratives to that nebulous sinkhole of “hysteria.” Listen to women. Believe women.
What research on spinal CSF leak do you hope to see in future?
I would like to see more spinal CSF leak research in the following three areas: Education, including med school and medical app information saturation of spontaneous, idiopathic, and ongoing spinal CSF leak/SIH as rare but diagnosable conditions (since many doctors still believe SIH/ongoing spinal CSF leaks don’t really happen); technology, including development of better leak visualization tools; and clinical studies, such as investigations of ongoing post-leak symptoms and the fluctuations of intracranial hypo- and hypertension, including management tools.