Shining Epilepsy Star - Jennie Stormes
Jennie Stormes is this issue’s shining epilepsy star for all she does to advance awareness and knowledge about Dravet's Syndrome (an epilepsy syndrome) and epilepsy in general. We were very pleased when she agreed to talk to us in depth about her experiences and knowledge.
What makes epilepsy personal to you?
Epilepsy is personal to me once it impacted my life in 1999 when my son began having seizures at only 4 months old. From one specialist to another, one medication to another, no answers or solutions, the seizures continued and the challenge to understand and overcome epilepsy became important to me. When I entered nursing school, I continued to seek answers as to what was the cause of his seizures. I discovered, via a homework assignment, that my son has Dravet Syndrome with a confirmed genetic mutation on the SCN1A gene. By that time he was 10 years old and a tremendous amount of time had been lost treating his epilepsy without the proper diagnosis.
How did things change when epilepsy touched your life?
Everything changed after the onset of my son’s seizures. Life became unpredictable and changed forever. The focus was no longer on fun, friends, and family. The focus was on health and avoiding seizure triggers, complying with medication schedules, and frequent trips to doctors and emergency rooms. We lost a lot of friends due to the stigma of epilepsy and had to begin educating others about what epilepsy is and what it is not: certainly not contagious or anything to be feared but rather something that must be lived with daily.
How has being an active epilepsy advocate helped?
The education of others has helped me tremendously to continue to live with epilepsy and support both of my children. In 2004 when the school district in another state began to treat my son based on his diagnosis and not his educational needs, I went to the newspaper and did an interview. (Riding Out the Stormes by Alex Lazo 1-24-2004-winner of the EFA Journalism Award- is on his website www.JacksonStormes.com). After the newspaper article was published many people reached out to me and one elderly gentleman stands out to me. He was thankful for my braveness in coming out with our experiences with epilepsy. He shared with me that just that morning, after reading the article about my son, he shared with his wife that he also had epilepsy. The truth is that he was now in his retirement years and had been married for over 50 years and never told his wife that he had suffered from seizures since childhood. The medication he had taken for all of these years was not for his heart, but in fact, was to control his seizures. This little bit of education unveiled the stigma behind the diagnosis and allowed him to be honest with himself and those closest to him. These kinds of stories motivate me to keep telling my story and sharing with others while educating about epilepsy in general.
What are the kinds of resources that you and your family needed when you started this journey that were not available and how is your work changing this?
Knowledgeable experts were not readily available with the proper testing tools (including genetic testing) to best diagnose my son. This was partly controlled by the insurance companies and my lack of knowledge. Today, children are being diagnosed faster and receiving the appropriate treatment which is not possible when the type of seizure disorder is unknown. This lack of access for my son led to many years of the incorrect medications, treatments, and surgical procedures which only added to the daily trials of living with epilepsy. In my opinion, the proper tools should always include genetic testing for all possible epilepsies to rule out the causation. The information gleaned should then be used to choose the most appropriate medications or treatments with the least side effects, while avoiding known medications which make the seizures worse.
In what sort of epilepsy activitities do you engage?
Peer-to-peer support and education. I direct families to Facebook support groups and other parents. I try to connect families with knowledgeable and appropriate doctors for ongoing care. Encourage responsible treatment and ongoing care for epilepsy and related issues.
Do you work with or receive help from the Dravet.org Foundation or any other foundations?
I have been supported by all of the Dravet Organizations which are national organizations. Both Dravet.org, as well as Dravet Syndrome Foundation have been supportive in many ways. The Epilepsy Foundation has also trained my son’s school teachers, bus drivers, and nurses to respond to seizures and to provide an appropriate educational environment. Here in NJ, the Epilepsy Foundation supports families through the Family Resource Network with information and services available in the state.
What are your plans for the future, what would you like to see in your future?
I became a registered nurse after my son’s brain surgery in 2008. I want to help children and their families navigate medical and educational systems to best help their child; find treatment options including the Ketogenic diet and alternative treatments when appropriate. Most recently, I have begun the process of using CBD in high quantities to treat my son’s Dravet Syndrome as a last resort. So far, the treatment is proving to be effective and is helping him with behavioral improvements, cognition, and better health overall. I plan to support my son and work towards gaining seizure control so he can have the best life possible. He wakes up every morning with a smile on his face and says “Good Morning” to everyone. He deserves a good life.
How can people stay in touch with you or follow you?
Meet my son at his website www.JacksonStormes.com or email me at jennstormes@yahoo.com
