SADS Spotlight: John and Carter
Carter (left), mom Katie, and John (right) Name: John and Carter Cox (Twins) Age: 3Which SADS condition do you have? Long QT type 2 When were you diagnosed? Birth How are you treated? Propranolol three times day. Potassium two times a day. AED with...
read moreOur LQTS Story
We first contacted SADS when my middle child was 8 years old and had several “episodes” that looked like seizures. We had no idea what the problem was. His brain scans were good. His pediatrician told me “oh, all 8 year olds faint now and then”,...
read moreThrough Love and Faith: An Interview with Rebecca Hernandez
The Hernandez family March is Brain Injury Awareness Month. Brain injuries can result from many causes. One of these causes is anoxia (lack of oxygen) as a result of a SCA. As many as 18% of those who survive an out of hospital SCA have a moderate...
read moreSADS Spotlight: Danielle and Alanna
Name: Danielle and Alanna Mundondo Age: 34 and 4 Which SADS condition do you have? Long QT Syndrome Type 2 When were you diagnosed? Age 19 via abnormal ECG and genetic testing for Danielle. At birth via cord blood genetic testing for Alanna. How are you...
read moreSelfies With AEDs
Do you notice AEDs in your community? If you’re at work, out shopping, working out or participating in your everyday activities - could you find the AED immediately if someone were to need it? I’m the mom of two girls with Long QT and I wasn’t in the habit of noticing...
read more“I Had To Do Something”: An Interview with Rare Disease Advocate Courtney Waller
February 28th is Rare Disease Day. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. While all SADS conditions are considered rare diseases, we want to focus on Timothy...
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