News - Uncategorised

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

12 Days of Christmas – Day 7

December 2021

On our 7th Day of Christmas we learn all about Sofia, a 6 year old who was diagnosed with epilepsy and leukodystrophy in 2020. Sofia is a 6-year-old girl who developed typically and mostly on track except for a minor speech delay until 3.5 years old. Sofia had her first seizure a few months before her 4th birthday in 2019. Her seizure was a grand mal seizure and she had two more in the ambulance ride to the hospital. Because she had multiple seizures, she was diagnosed with epilepsy that year. We started her on a medication and assumed they would be controlled and she would carry on as a typical little girl to grow and develop “normally”. Unfortunately, that medication didn’t work which began a trial of several other medications and ultimately the addition of the medical ketogenic diet for epilepsy to get her seizures well controlled.

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Rarely Heard Podcast

December 2021

Rarely Heard by Findacure & Same But Different A rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with rare diseases. The debut season will be focusing on mental health.

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