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Patient voices
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…
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
Patient voices
I knew things weren't right when a nurse called me on my cell phone just a few minutes after she sent me to pump milk in a private room and said that the medical team wants to meet with my…
I knew things weren’t right when a nurse called me on my cell phone just a few minutes after she sent me to pump milk in a private room and said that the medical team wants to meet with my husband and me immediately in a conference room. My suspicions were confirmed when we walked into a conference room and saw a long table full of doctors who all stood …
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Getting a terminal diagnosis for my baby
Patient voices
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…
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
Patient voices
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…
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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