The Rare Epilepsies - #DareTo Get Involved

Epilepsy News From: Wednesday, March 11, 2015

Community Corner: March 11, 2015

Lately, you’ve probably been seeing the term “rare epilepsies” a lot on www.epilepsy.com. There are many different types of seizures and epilepsy. By knowing the type of epilepsy syndrome you can learn about the numbers of people who may be affected, the types of seizures usually seen, areas of the brain involved, possible causes, EEG findings, and outlook if known. Most importantly, many forms of epilepsy have other conditions associated with it, such as other neurological or developmental problems.

What is a “rare epilepsy”?

A rare epilepsy is a type of epilepsy that occurs in a small number of people but can affect the individual and their family in many ways. Rare epilepsies usually have very difficult to control seizures and the term refractory epilepsy is used. Often multiple seizure medicines may be needed. Other treatments such as dietary therapy, a device, or surgery may be options for some people.

The cause of many rare epilepsies is unknown. Increasingly we are learning about genetic factors that may affect brain development, metabolic disorders or a condition that affects how the brain works, or a problem in the structure of the brain or how it looks. Any of these types of problems could give rise to epilepsy and other conditions. Sometimes there may be multiple causes.

Why are these types of epilepsy so important?

All types of epilepsy are important! Many of these rare epilepsies don’t respond to treatment and cause a variety of other problems. The epilepsy or the other conditions (or both) can wreak havoc on children and families.

The epilepsy syndromes highlighted this week in our newsletter – Ohtahara Syndrome and Angelman Syndrome – are examples of how a rare epilepsy can affect people. Further, because the numbers are so small within these diagnoses, meaningful and patient-centered research is difficult.

Keep in mind that while epilepsy affects everyone differently, many of the rare epilepsies share common features, symptoms or side effects. That’s why research is needed to understand these types of epilepsy better. The more we know about the epilepsy and how it affects someone, the more likely it is that new ways of diagnosis and treatment can be developed.

What is the Epilepsy Foundation doing to help people living with rare epilepsies?

The Epilepsy Foundation is working together with Research Triangle Institute, Columbia University, and many nonprofit organizations to create a registry of people with a rare type of epilepsy. This Rare Epilepsy Network hopes to lead the way to better understanding and treatment for so many.

For more information:

We can continue to add groups and rare epilepsy diagnoses. If you are interested, please contact the REN.

I hope these resources help broaden your awareness about rare epilepsies and help drive hope and help to everyone affected. A special thank you to the REN Partners!

#DareTo Get Involved!

Best wishes,

Patty Osborne Shafer RN, MN
Associate Editor, Community Manager
Epilepsy.com

Authored by

Patty Obsorne Shafer RN, MN

Reviewed Date

Wednesday, March 11, 2015

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