Letters to the Editor: People with epilepsy are afraid to talk to their doctors. How California can change that

To the editor: We at the Epilepsy Foundation Los Angeles were heartbroken to read Paul Karrer’s article about his father’s death.

His story, however, is a tragic outlier. Adults with well-controlled epilepsy are involved in fewer crashes than drivers with many other medical conditions. One study found that a fraction of 1% of all car crashes are caused by a person with epilepsy.

People with uncontrolled epilepsy or who are not taking their medication as prescribed should not be driving. People should also be honest with their doctors — but California is one of only six states that require doctors to report anybody with epilepsy to the government, making many afraid to speak openly to their physicians.

That’s why we support Senate Bill 357 by state Sen. Anthony Portantino (D-La Cañada Flintridge). SB 357 would replace an ineffective mandatory reporting system with one that promotes honest dialogue, while maintaining the DMV’s authority to withhold or suspend a license from a potentially unsafe driver.

Too many people with epilepsy live in fear and shame of their condition. As we learned from Karrer’s piece, making people afraid to talk about their seizures with their own doctors can have tragic consequences.

David Parker and Rebekkah Halliwell, Los Angeles

The writers are, respectively, a board member and the executive director of the Epilepsy Foundation Los Angeles.

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To the editor: Karrer’s op-ed article reminded me of when I lost my driver’s license due to epilepsy.

Just like his father, I had a tragic accident as a child — I drowned and had to spend weeks in an oxygen tent.

I then began going through life with weird little episodes that my mother just told me were headaches. I was finally diagnosed in my late teens with a complex partial seizure disorder.

No one was the wiser and I was able to get my license. Reporting was slow back then and I drove for years. I would always pull over when I started feeling “funny.�

One day I was contacted by the DMV. My doctor had reported my condition, and the DMV finally caught up to me and took my license.

How dare you! Driving is my right. “Ha,� said the DMV. “It’s a privilege, sir.� So, I had to take public transportation in college.

I had brain surgery in my early 20s to remove a scar that developed on my brain from the drowning. After six months being seizure free (no lying), I got my license back. That was more than 30 years ago, and I’m still seizure free and driving — again, no lying.

Jason Williams, Lakewood