Hope For HH Headlines and past Events
Recent and past news stories on hypothalamic hamartomas and it’s symptoms
Endocrinology
Research articles discussing hypothalamic hamartomas and impact to the endocrine system
Dacrystic Seizures
Research articles discussing dacrystic seizures and hypothalamic hamartoma
Adults and HH
Research articles covering how HH impacts adults
Cognitive, Behavioral, Psychiatric
Research articles covering how HH impacts the cognitive, behavioral, and psychiatric aspect of those with HH
Please Participate in the Rare Epilepsy Network (REN) Registry
by Ilene Miller Some of you may wonder why I keep pushing for the Rare Epilepsy Network Registry (REN) so I wanted to share a more complete reply. My son Mark who just turned 13 also has HH. He was diagnosed a age 5. I live in Bethesda, MD and am an attorney by training.…
Rare Disease Day February 28
by Katherine Busby Today is Rare Disease Day. It’s the day to recognize all those thousands of diseases that largely go unnoticed, diseases that receive little funding to researchers from drug companies and from the government because the patient population isn’t big enough to make it cost-effective. Collectively though, thousands suffer from these diseases and with the…
Introduction and Update from Carrie
Hi my name is Carrie and I am a young adult living in the UK and was diagnosed with HH in 2013. I am writing this blog to show how easy it is for patients with HH to be misdiagnosed and undergo unnecessary procedures. Thankfully I have turned my life around but it wasn’t easy after…
Grace Katherine Webster (2003 – 2011)
After nearly 8 years of a courageous battle with a hypothalamic hamartoma, Grace passed away unexpectedly on December 11, 2011. Grace brought joy to the lives of those who loved her with her gentle smile and loving personality. Gracie loved going to school, making jewelry, doing puzzles and taking care of her baby dolls. She…
Jake Case (1982 – 2012)
Jake was diagnosed with HH when he was 4 years old. In spite of his seizures, he was a very happy young man. He loved to watch movies and he had acquired quite a collection of his own. He especially enjoyed his “movie nights” with his favorite Aunt! He also enjoyed drawing and coloring, as…