All tagged Epilepsy
Allison Lefrak and I connected through Substack several months ago and after reading a few of her posts I knew I needed to share her words over here on Inchstones. I was thrilled when Allison agreed. Today I am honored to share her heartbreakingly beautiful essay about parenting a teen with epilepsy, the impossible questions that arise, and finding new sources of hope when the old ones fail us.
Tis the season when my non-profit involvement and fundraising gears up. For those unaccustomed with non-profit meetings and fundraisers, the bulk of them tend to occur in the spring and fall. Cue all the committee and board meetings, concerts and speeches. I am writing this from the Undiagnosed Diseases Network Symposium in Boston where I am listening to researchers, clinicians, doctors, and patients share experiences, best practices, and latest technological advancements for the undiagnosed community.
In honor of yesterday’s Purple Day, I’m changing up my usual format this week and posting an interview with Dr. Ashlyn Sanders, an awe-inspiring woman who has invented PATI, an FDA approved medical device that is already helping prevent oral injury in epilepsy patients across the country.
This week I’m pivoting from my normal blog style to provide an update on US government funded medical research. With so many eye-catching headlines, there hasn’t been a lot of attention paid to this corner of the government recently – but you should know what’s happening here.
If you all are anything like me, you could use a little pick me up right about now. My gift to you this week is a sweet story that comes with the reminder that for some godforsaken reason we have to have darkness before light.
Last year I shared that we found Adelaide’s true diagnosis. Now, additional findings, which Adelaide's tissue and data were a part of, have been published. Learning her diagnosis felt anti-climactic, but this study, even the little bit that I understand, has brought me peace I hadn't imagined.
If you are fortunate to live long enough, inevitably you will experience moments that forever change the trajectory of your life. These are the dates we recall effortlessly, markers in time, that separate life into before and after. My most significant date is May 26th, 2016. Not even Adelaide’s death, Jackson’s birth, or Anessa’s arrival can compare to the change leveled on our family that day.
Karen Valentine turned to advocacy alongside the unexpected role of medical caregiving when her son Levi was diagnosed with epilepsy. Then, last year, Levi, passed away from SUDEP when he was only 16 years old. During a recent conversation, she mentioned the irony of going from being a selfless caregiver to the necessary selfishness of grief and what a struggle that aspect had been for her. Woah. So, I asked her to write about it.
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
Earlier this year, I received an email from our representative at the Undiagnosed Diseases Network. They had finally received and analyzed the results from the genome testing done on Adelaide’s donated brain. The emotions that ensued took me on an unexpected ride leaving me yearning for the peace I had hoped would come with a diagnosis.
For those of us well-versed in epilepsy, the connection between seizures and their psychological effects is a no-brainer (pun intended). However, the lack of available providers and treatments is all at once infuriating and devastating. This is a topic that comes up all too often during my interviews for CURE Epilepsy’s Seizing Life podcast. It is also one that this week’s guest blogger, Yarrow Rubin beautifully describes in a powerful essay.
