For many students with HH, starting a new school year can be very stressful. For many parents and caregivers, it can mean the drama associated with IEP meetings, 504 Plans, and dealing with new teachers – begins all over again. For many students, of all ages, with HH – one of the greatest challenges in…
We asked our patients recently and here’s what they shared… “When I had seizures as a kid used to get a feeling that went from my head to my gut. I used to feel them coming on and tell my parents.” “I didn’t feel anything in my stomach, but overcome with happiness/the need to…
No matter what country you reside in, it is important to educate yourself about the process to get the BEST care. In the United Kingdom, Great Ormond Street Hospital for Children (GOSH) has a team of mental health professionals with expertise in Hypothalamic Hamartomas (HH). However, because GOSH is a tertiary referral centre – they…
Hope for HH seeks opportunities to better understand the many facets of living with HH and epilepsy. We frequently share research projects that encourage patients and caregivers to answer questions that will lead to a better understanding of particular topics. The Rare Epilepsy Network in conjunction with The Children’s Hospital of Philadelphia (CHOP) is…
For many individuals with HH, one of the most difficult challenges in day-to-day living involves something professionals call Executive Functioning skills. Executive Function skills serve as the Command and Control center in the brain – they help you manage life tasks of all types. Does this sound familiar – you or your child may struggle…
Dr. Isabel Heyman presented findings from a recent research study at The 3rd Annual HH International Symposium (London, Sept. 2016). In brief, Dr. Heyman analyzed 46 patients and found greater than 70% had behavioral/emotional disorders (including ADHD, anxiety, mood, etc) and 46% exhibited rage/aggression. 50% of patients also had cognition issues from mild to severe.…
I remember driving my car many years ago, listening to one of my favorite radio shows, Car Talk – Click and Clack The Tappit Brothers. At the close of their show on this particular day, they ended with the usual clever banter. But for me, this day would be anything but funny. One brother said…
