Hope For Hypothalamic Hamartomas - March 2020
COVID-19 Information and Resources
Our main concern is always the well‑being of our HH community. Our hearts and thoughts go out to everyone who has been directly affected by COVID-19. The virus does not discriminate and in fact can be deadly for the most medically fragile among us. Although epilepsy doesn't put you at greater risk of the virus based on current data, there are those in our community that are still dealing with complications from surgery and other comorbidities which may increase risk. Even though the virus itself can be minor in some cases the fever associated with the virus can increase seizure activity. For specific concerns as they relate to individuals with epilepsy, please review these resources from Epilepsy Foundation and Epilepsy Action UK .

For the general public, the CDC has released an excellent set of easy-to-follow guidelines for how to help stop the spread of COVID-19. They’ve also released a COVID-19 fact sheet that includes symptoms, and simple precautions that you can take in your day-to-day life.

Many in our HH community may be at a higher risk due to comorbidities and we recommend you review the information and additional guidelines the CDC has created for the high risk population.
Webinar from our partners at DEE-P Connections and Epilepsy Foundation

We know that with the COVID19 pandemic spreading rapidly, these are scary, uncertain times for our HH families and others considered at high risk.

DEE-P Connections, in conjunction with Epilepsy Foundation of America, is hosting a webinar specifically geared towards those with epilepsy and those considered medically complex.

On March 19th, at 7PM ET, we will host a webinar "Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19" moderated by Heidi Grabenstatter, PhD - Science Director IFCR

Speakers include:

Mental Health and COVID-19
The mental health impacts of the COVID-19 health crisis are a critical factor to consider. The effects linger for those who lose loved ones and for those whose anxiety, post-traumatic stress, and other serious conditions are left untreated.

Many in our community suffer from anxiety and depression as a result of having HH. The current crisis with the COVID-19 virus can increase severity and we want to make sure you are aware of existing resources that can help.


Additional Resources for Our HH Community
CURE hosted a  Facebook Live stream  on COVID-19 neurologist Dr. Jeffrey Loeb, neuroimmunologist Dr. Michael Carrithers from the University of Illinois at Chicago, and pediatric neurologist Dr. Douglas R. Nordli from University of Chicago Medicine. This prerecorded event can be viewed here.

Epilepsy Foundation hosted a Facebook live stream on COVID-19 to address the many question around epilepsy and the coronavirus.

Thank you to Patty Osborne Shafer RN, MN, for moderating this discussion with Jacqueline French MD and Elaine Wirrell MD.
You can listen to this recorded Facebook Live stream here.

Questions to include:

  • Are people with epilepsy at greater risk of developing COVID-19?
  • Can getting the coronavirus increase seizures?
  • How do I get extra medicine for an emergency and will it be covered by my insurance?
More Questions about HH and COVID-19
If you have specific questions regarding HH and COVID-19 please send them to info@hopeforhh.org and we will engage our Medical Advisory Board to get you answers.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org