Sophia Zilber is a patient advocate.

Reflecting on the challenges of patient advocacy

Patient
September 9, 2020

The third week of September is Mitochondrial Disease Awareness Week: a time to fundraise, light up buildings in green, and hold events that highlight mitochondrial disease research and awareness.

My family has never heard of mitochondrial disease until 2017, when our newborn daughter, Miriam, tragically died from it at seven weeks old. Our family felt a profound sense of loss and tried out best to participate in awareness and fundraising efforts …

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Reflecting on the challenges of patient advocacy

To anyone in medicine: This is why listening matters

Patient
October 17, 2019

Victor Frankl is an Austrian neurologist, psychiatrist, and Holocaust survivor, who survived three years in the concentration camps of Dachau and Auschwitz.

He once told a story about a woman, his patient, who called him in the middle of the night saying that she wants to commit suicide. Viktor Frankl kept her on the phone, giving her many reasons to keep on living, until she promised not to take her life. …

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To anyone in medicine: This is why listening matters

When doctors are right

Patient
August 7, 2019

As I was scrolling through my Facebook feed one morning, I noticed an article with a title starting with: “When Doctors are Wrong” with a picture of a newborn baby with a breathing tube in the NICU. I immediately opened the article and started reading it with interest because my baby also looked this way, so tiny, in the NICU, with lots of tubes all covering her little body.

As I …

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When doctors are right