Amanda’s Epilepsy Journey
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
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Amanda’s Epilepsy Journey
Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
A recent article from The Economic Times spotlights the intriguing case of a young boy from South India who repeatedly fainted during baths—a perplexing pattern that led to the identification…
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Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
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Mom Saves Daughter with Propionic Acidemia
When Ivy Reed was just two weeks old, she was first diagnosed with two conditions: non-verbal autism and propionic acidemia, the latter of which is a rare metabolic disorder. Because…
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Mom Saves Daughter with Propionic Acidemia
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Their Family Tree Revealed Their Ancestors and a Mysterious Brain Disease
Dr. Douglas Marchuk, professor of genetics at Duke, has spent years studying the genetics of cardiovascular disease. According to a recent article in the Atlantic, his research at the University…
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Their Family Tree Revealed Their Ancestors and a Mysterious Brain Disease
A Mother Has Raised Millions to Develop a New Drug to Treat SLC6A1
After two years of in vitro fertilization treatments, Amber Freed, Age 38, and her husband Mark Freed of Denver, Colorado welcomed their twin babies Riley and Maxwell into the world.…
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A Mother Has Raised Millions to Develop a New Drug to Treat SLC6A1
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This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift
According to a story from spectrumnews1.com, three year old Israel Bombela has endured many health challenges in his short life so far. The youngster went through a bout of COVID-19…
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This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift
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FDA Approves of Status Epilepticus Treatment, SESQUIENT
Sedor Pharmaceuticals, a partner of Ligand Pharmaceuticals, has recently received FDA approval for SESQUIENT, its status epilepticus treatment. It has been cleared for the treatment of both adult and pediatric…
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FDA Approves of Status Epilepticus Treatment, SESQUIENT
Tuberous Sclerosis Research Gives Insight Into a Cause of Autism
As originally reported in MSU Today; in new experiments on mice, researchers looked into how the TS gene is related to autism. Tuberous sclerosis is a rare disorder known for…
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Tuberous Sclerosis Research Gives Insight Into a Cause of Autism
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Repurposed Drug for Dravet Syndrome Has “Definitely Exciting” Results
As originally reported in Medscape Neurology News, for the last few years, doctors and researchers have been excited by the new prospect to use an obesity drug, fenfluramine, to treat…
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Repurposed Drug for Dravet Syndrome Has “Definitely Exciting” Results
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How to React to the TSC Seizure You Never Expected
I was once walking through an outdoor festival near my hometown. There was a band playing off in the distance, but I didn’t know them or the song they were…
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How to React to the TSC Seizure You Never Expected
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Why is She Having a Difficult Time Accessing Marijuana for Seizures and Status Epilepticus?
Sarah Trask had childhood cancer 32 years ago and had four brain surgeries. Sarah is a survivor. As a result, epilepsy is the side effect she is living with. Sometimes…
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Why is She Having a Difficult Time Accessing Marijuana for Seizures and Status Epilepticus?
