Happy New Year, “Not Just a Dad” friends! I hope your holidays were happy and healthy, and that 2022 has started on a positive note for you. I’m delighted to share this guest blog from Peder Jenson, M.D., one of NeuroNetworks Fund’s board members and a physician who has specialized in and treated people with epilepsy for decades.
Since approximately 30% of autistic people will also have epilepsy, I wanted to share Peder’s thoughts about some critical needs in epilepsy treatment. Here you go – please send along your comments and thoughts!
I have been involved with the diagnosis and treatment of adults and children with epilepsy for nearly 40 years. I have been privileged to also have had a front seat in the development of several new treatments for both adults and children. My interest in improving the lives of patients with epilepsy is what attracted me to work with the NeuroNetworks Fund.
Let’s go over some important background information that may be useful to the reader. In the US, about 1.2 % of the total population suffers from epilepsy, which makes it one of the most common neurological diseases in our country. This translates into more than 3 million adults and more than 450,000 children. About 20-30% of these patients do not respond to currently available treatment options. This is called refractory epilepsy.
What can be done to help patients with refractory epilepsy?
The answer to this question is complex and involves several approaches and options, of which I only will mention two. The development of more effective anti-epileptic drugs is very important. Treatment options have been improved but we still have a long way to go in this area.
The second area that I would like to focus on today is the diagnosis of different types of epilepsy and the monitoring of how effective a treatment is for individual patients. Most people are familiar with the most dramatic form of epileptic seizures -the generalized tonic clonic type, also called ” grand mal.” This kind of seizure is difficult to miss.
Another kind, “absence” seizures, are harder to identify – sometimes a child may just blank out or stare off into space for a short while. It’s estimated that 15-20% of all newly diagnosed people with epilepsy have absence seizures. These can appear in very high numbers, often exceeding 50-100 per day. Typically absence seizures are not recognized by the child’s immediate environment. In the school they are often mistaken as being a student who can’t concentrate or who is a dreamer, and the underlying issue is being missed.
An EEG test is the gold standard to provide an accurate picture of brain activity. But high quality EEGs must be done in a hospital setting, and cannot be done at home. Accurate home monitoring is needed.
EYSZ is a start-up company that NeuroNetworks Fund has invested in. EYSZ has developed a software system that monitors passive eye movements, which identifies and quantifies seizure activity in the home setting.
This not only makes it easier for a physician to recommend more effective treatments, but this software can also be used to monitor the effectiveness of the prescribed treatment and see if seizures are being reduced.
The EYSZ software could be an important tool for physicians to monitor the effectiveness of any treatment in patients suffering fr.om uncontrolled absence seizures.
As we begin 2022, consider partnering with us at NNF, and make a small, tax-deductible contribution to help make innovation in epilepsy and autism happen faster.