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Epilepsy Blog Relay: A system of support

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Soo Ihm has lived with epilepsy since childhood. Now in southern California, she writes the blog Soo’s Epilepsy Corner and is an advocate for epilepsy awareness. She enjoys playing the piano, going to art museums, and learning foreign languages, among other things.

About My Blog:

Soo’s Epilepsy Corner is a place to discuss issues related to epilepsy. I want to share my experiences living with epilepsy as well as provide access to reliable resources for people with epilepsy and their families and caregivers.

A System of Support

I feel very lucky to be where I am in life today. Epilepsy is a hindrance that I have to deal with every day. The seizures persist despite the various treatments I have tried. However, I have a family, a doctor, and epilepsy support/advocacy group I can depend on. This is a great comfort, and I know that no matter what happens, they will always be there to help.

A stable system of support is vital for people with epilepsy. Without it, life would be much more difficult and perhaps people with epilepsy would still be locked up in institutions or worse yet, killed for having a condition they cannot control.

It is thanks to the activists—families, doctors, research organizations, and advocacy/support groups—that people with epilepsy have come out from the shadows and are integrating into society. I myself have always been fortunate to have this kind of support. Even though my seizures are not under control, my doctors tried and are continuing to try anything and everything they can to reach the goal of seizure freedom. Also, I have been lucky to have access to support groups for people with epilepsy. These organizations help educate as well as provide an outlet to connect with others in similar situations. Finally, my family has been my pillar of strength, comforting me when times were difficult.

Doctors

I believe in general that all doctors always want the best for their patients. That is the case with me. I’ve been on more medications than I can count, trying many different cocktails that always left me with severe side effects. At one time, I was taking five medications. Now I’m on four (not much of an improvement, but at least the side effects aren’t bad). I am a tough case to crack, and it is thanks to my epileptologist who thinks outside the box, that perhaps I may get find a treatment that will work for me. With all the new technology and developments in treatments for epilepsy, the possibilities are there.

Support Groups

Support groups for people with epilepsy are extremely helpful if you live with this condition. I have first hand experience. When I lived in Missouri, as a college student, there was an epilepsy support group run by the local independent living center, of which I later became a board member. The group was a nice place to share our experiences with epilepsy and talk about our challenges and successes. The nice thing about that organization was that they provided free transportation to and from the meetings, an issue many with epilepsy face.

Community Resources

When I moved to Southern California, I was amazed at the resources that were available! The Epilepsy Foundation located in Los Angeles provides a monthly support group meeting as well as periodic informational seminars and other interesting events. I attend their “Walk to End Epilepsy,” their annual fundraiser at the Rose Bowl in Pasadena, CA.

The Epilepsy Support Network of Orange County (ESNOC) is the go-to place for any epilepsy-related information in southern California. They serve 32,000 families in Orange County. When I first arrived, I did not know what doctor to go to, so they were the perfect resource to consult with. The Epilepsy Support Network, as the name implies, is a place of support for people with epilepsy and their families. The monthly meetings, which I attend, are very helpful since you get to connect with others who are in a similar situation.

There is also another mission of the ESNOC: education. For first-timers or people who want a refresher, there is always a Seizure First Aid 101 before the main meeting starts. At the meeting, there is usually a doctor or nurse, speaking about an epilepsy-related topic. I find these talks most helpful since we learn what is new in the world of epilepsy treatments, including devices, medications, diets, and surgeries, not to mention CBD. I think the best monthly meeting is in November for the “Talk to the Docs” program. That is when all the doctors get together for a panel discussion and afterward, we are all able to visit with them individually to discuss any personal questions we may have.

The founder and Executive Director, Janna Moore, is an amazing and dedicated person to this cause. Since her daughter has epilepsy, she has been fighting for her and all the others who suffer from seizures, in hopes that one day we will find a cure.

Family and friends

Finally, my family has been my strength of support. They have (almost) always been there when I needed them. (One time I was at home and my mother was out doing errands and at the time I was taking Vimpat and it made me extremely anxious and depressed. I couldn’t help but cry my eyes out and I wanted her to hold and comfort me, but alas, she was not there, physically.)

My family has supported me in everything I have ever done. I learned how to ride a bike and went swimming when I was a child. When I was a teenager, epilepsy was coming out of the shadows. I found information from the Epilepsy Foundation and mailed them a letter requesting brochures about it. I declared to my parents that from then on, I would call my condition “epilepsy” and would not hide it any longer. Surprisingly, they responded positively, without hesitation. It is this kind of support that I hope all people with epilepsy can have.

http://esnoc.org/
https://endepilepsy.org/greaterlosangeles/


NEXT UP: Be sure to check out the next post by Jennifer at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy.

2 Responses

  1. Flower Roberts
    |

    I am very happy to get to hear from many people about epilepsy. For decades my daughter and I felt alone in our struggles. Your sharing your experiences and expertise means so much. Thanks
    seizuremamaandrose.org

    • Soo Ihm
      |

      Hi Flower,
      I’m glad hearing about others’ experiences helps you. I think this is a great place for us all to share.