One of the questions that a person living with epilepsy is always asked is “what is epilepsy?” Epilepsy has been defined as a chronic neurologic disorder of the brain, and according to the World Health Organization (WHO), more than 50 million people worldwide are living with epilepsy. While it is not contagious, there has been a lot of social stigma around this disease. It is characterized by episodic seizures and the causes include but are not limited to brain damage from prenatal injury, congenital disorders and abnormal brain development. A seizure is a sudden surge of electrical activity in the brain. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness.
While this is the scientific definition I am always faced with how to simply explain what epilepsy is – something that I have struggled my whole life to understand. With the social stigma, I have come up with a definition that is less demeaning and easier for the public to understand. To me, epilepsy is simply ‘fighting you for you’. I have chosen this definition because this is what it feels from personal experiences. During the seizures, the pain is so intense and real, and I fight for it to end, but the more I fight the more prolonged it is. The medical experts say “you should let the seizure take its course” but that is easier said than done. I say ‘fighting you for you’ because on several occasions I have to fight different factors that may possibly cause epileptic seizures. These factors range from diet change, to being emotionally hyped, a change of environment, an infection, a simple pollination of flowers, the anti-epileptic drugs, and the most difficult for me as a woman is the unavoidable monthly cycle among others.
Early experiences with epilepsy
My first seizure happened when I was still a baby but doctors told my parents that it was a convulsion. They said that I would grow out of it when I got to a certain age. Well, that did not happen and in fact the seizures got worse so I was put on medication. From when I was around 8 years old, my family moved a lot due to my dad’s different work postings. We eventually settled in Zimbabwe when I was around 11. I had a neurologist in South Africa who monitored my progress and said I was fairing on well, and the prescriptions for my anti-epileptic drugs reduced but somehow my health deteriorated again. The truth is this had both a physical and psychological effect on me and I felt like yet again I had failed in accomplishing a goal. The seizures were getting the best of me physically. I was getting emotionally bullied in school and this had its fair share of negative effects on me psychologically. I decided that going to school was not an option for me because it was a reminder of my abnormalities.
The social burden of epilepsy
My parents were able to somehow convince me to go back to school. According to research, people with epilepsy feel stigmatized by their conditions. Further evidence from research, show that the stigma correlates with anxiety, depression and low self-esteem. In school I had no friends because people thought it was contagious and that I was bewitched. I went through high school feeling and being lonely with just a handful of friends who to some extent understood my condition. It is hard up to date to live with epilepsy because people are unfortunately still uneducated on the matter. We moved back to Kenya, my home country in 2013 where I finished high school studying under the Accelerated Christian Education System. The stigma of living with epilepsy back home in Kenya was the same as in Zimbabwe. The reaction from my fellow students was the same and so was the treatment. I joined university in 2017 and I was determined that it was a fresh start for me. No one knew of my condition and therefore I fitted in nicely.
Epilepsy in college
At first I was very reserved and introverted but as time went by I became fairly out spoken. With my determination of being “normal”, and not sharing my condition with anyone, the first one and a half years of university I would occasionally get sick and have serious injuries. I had and still have encounters with lectures telling me I ‘faked’ my condition as an excuse for missing classes or not do exams. Some lectures put me in compromising positions and with my refusal to their expectations; there was a price to pay hence being graded unfairly on some occasions. Due to the prolonged use of the AEDs I had and still do experience memory loss issues – something that people with epilepsy experience as a side effect of the drugs but of course the severity is different for every individual. On some occasions they also said that I understood concepts slower than the rest of the students, which is another effect of people with epilepsy. Soon after, my condition was known to people around me at the university and of course they asked questions. My friends were helpful when I had the seizures and would put in the effort to make sure I got the necessary help but as time went on even they had enough and slowly started to leave. The medical team at the university was and is still helpful when called upon.
I am in my last year of University and honestly I have been through a lot and may not have the same amount of people in my life as when I started, but through those experiences there are positive factors to take from them. I still get the seizures but living well with epilepsy is a goal I hope to achieve. I am working with my neurologist to see what anti-epileptic drugs work best for me. I recognize that the medical experts can only do so much and it is upon me to do my part.
My 4 tips for living with epilepsy
1. Physical activity can help
Stress is a major problem for me. I can’t live with it and can’t live without it. In order to be able to control stress and minimize “spin cycling” in my mind, I have a list of do’s and don’ts to help me cope better with stress. I do this by engaging in physical activity and noticing when I am tired and allowing myself to take a rest.
2. Find work arounds for memory issues
Memory loss (brain fog) and short concentration span is another problem for me and for that I try having sticky notes and phone reminders to try curb it. Eating right also contributes a whole lot when it comes to mental clarity. A healthy diet is beneficial both physically and mentally.
3. Have a seizure response plan
Having a seizure pre-, during, and post plan is key because it helps the people around you to know what to do and not to do. Having a support system of family and friends is crucial because you don’t have to worry about being in safe hands. You can do this by informing the people who are around you what to do if/when you have a seizure; it serves as a first aid guide as well. Having an epilepsy diary is great so that you document what type of seizure it was, what happened during the seizure, when it happened and a lot more. This makes it easier for your neurologist to have better diagnosis.
4. Communicate with your neurologist
The most important thing to do is communicate with your neurologist. It is important that you let them know how you are faring, and how your AEDs are treating you because there are many other modes of treatment. If you feel the neurologist is the problem then change them, and never self-medicate as the interactions may have negative effects.
Lisa’s personal experience
Am not an expert but these are just personal experiences that I am sharing with hopes that they will help others and let them know that we all have a story to tell and we are perfect in all our imperfections. Even though I may feel like a burden because I get seizures and can’t do some “simple” things, I am reminded that every person is differently abled.
My name is Gideon Ronald Akanyijuka, CEO of Epilepsy Awareness Uganda (EAU). EAU is a Non Governmental Organization that brings together all persons aﬀected by epilepsy in Uganda.
This year has been so much difficult for everyone, but for people living with Epilepsy, it has been so much more difficult.
Epilepsy and Covid19
Considering that there was a lockdown in Uganda, a total lockdown for three months, getting medication was so difficult. And this made the conditions of most people living with Epilepsy worsens.
Having less or no meals even when they have to take medication made it worse. We received so many calls from our Epilepsy Awareness Uganda family who needed help but we could only reach out to few, due to fewer funds available.
Supporting our members
Though the year has been difficult we have had some good times as well. We received donations of wheelchair to one member, Fred, who really needed a wheelchair for easy movement. We have also received masks and sanitizers to distribute to our epilepsy family.
We also had a member who was afraid to open up to his wife about his epilepsy, but after talking to him he was able to tell the wife the truth. Epilepsy Awareness Uganda was able to provide the family with food and the member was concerned about telling his wife about the organization. We are excited that member family now has open communication about epilepsy in their home.
Lockdown in Uganda
Lockdown has since eased up and as the country is getting used to the new normal, nothing big has changed to our epilepsy community. Finding medication is still difficult, and many more needs.
The encouragement we all give to each other matters a lot. It will get better!
Matthew Williams was born on the 8th September 1994 and at the age of nine months old he had his first seizure, this seizure lasted for about twenty minutes and was the start of a very long and traumatic journey for my family. At one stage Matthew was having prolonged bouts of status epilepticus and many nights I spent in hospital with him in intensive care not knowing whether he was going to live or die.
I watched my son seize for hours in some cases and the future looked extremely bleak. Matthew was put on a lot of medication and the side effects from these started to become unbearable. In the beginning, when your child has a seizure you hold them and pray that they are going to be ok, that they are not going to die. But for us it got so bad that when Matthew had yet another prolonged attack, I would hold him and pray that he would die as I just couldn’t bear to see him suffer so much – then of course the guilt takes hold of you for even thinking such a thing. The more medication Matthew was put on, the worse his seizures and quality of life became.
I first found out about the Ketogenic Diet when Matthew was about 2 years old, but when I asked Matthew’s Paediatric Neurologist about it, she said that the diet did not work, that it was unpalatable, the children were sick through it and medication was by far the better option and was made to feel guilty for even suggesting the diet being told “don’t you think your son is suffering enough without putting him through this diet as well”. I believed her and did what I was told like a good patient. I carried on with the merry-go-round of different medications, but nothing seemed to stop Matthew’s seizures and if anything they were making the situation a whole lot worse. Matthew was also assessed for brain surgery, but by this time he had so much scarring and damage to his brain because of all the seizures, that there was no way that they could carry out any kind of brain surgery that would be of any benefit to him.
The drug merry-go-round went on for nearly six years and periodically in that time, I kept on asking for the diet and kept being refused. By this time, the film ‘First Do No Harm’ had been made highlighting the Ketogenic Diet, but when I questioned the doctors, again, I was told it was ‘Hollywood hype’ and the diet really didn’t work that well and that this film did not give the details of all the terrible side effects that there were with the Ketogenic Diet and once again I was told that drugs were the best option. However, Matthew was having terrible seizures every day, numerous tonic clonic seizures, drop attacks, absences as well as myoclonic jerks so powerful that they would knock him off his feet. The doctors said that IF he made it to the age of 12 then he would probably need to be in a residential placement as we would not be able to deal with him living at home anymore. The family fell apart and I was now a single mother of not only a severely disabled little boy but also his younger sister Alice whose life was also a complete misery as everything had to revolve around her brother.
When Matthew was 7 years old, on a yearly routine appointment with the same neurologist, I insisted that I wanted the diet because basically there was nothing else left to try. It was a choice of going through the same drugs he had tried before but in different combinations and more of them OR get him onto the ketogenic diet. There was no choice as far as I was concerned. I had to tick that box. The side effects of the medications were awful and his quality of life was so poor already that it really could not have got any worse for any of us.
A life changing clinical trial
Thankfully, Professor Helen Cross OBE and Dr Elizabeth Neal RD had just started their Ketogenic Diet Clinical trial at Great Ormond Street Hospital. So, we were referred over to see them, and Matthew was accepted to take part and within 2 weeks of starting the classical Ketogenic Diet. Matthew’s seizures had reduced by 90%, and within eight months of starting the diet he was off ALL medication!
His quality of life improved dramatically. No longer were there terrible side effects from the medication. No longer did Matthew scream all day. No longer was Matthew aggressive to anyone around him by biting, hitting and pinching. No longer did Matthew try to knock over furniture in the house and generally disrupt the whole family. He was calmer, happier, more relaxed, sleeping and turned into a very loving little boy. I had finally got back what was left of my son, and my daughter could finally have some kind of sibling relationship with her older brother. It was a joy to watch.
The fear that I was made to feel over the side effects of the diet were totally unfounded. Matthew experienced NO horrendous side affects to the diet whatsoever, Matthew was NOT sick all the time and the food was NOT disgusting and unpalatable. In fact in some cases, it was more difficult for Matthew’s sister Alice, as there was Matthew eating a nice Keto blueberry muffin and a banana milkshake for breakfast, whereas his sister was only allowed a bowl of cereal or some toast! Matthew was on one version or another of the diet for nearly six years and did just fine, the only reason he was kept on it for so long was because I was too scared to wean him off!
During this time, we also discovered that Matthew had Dravet Syndrome, a catastrophic epilepsy syndrome. It was with this diagnosis that we understood why some of the drugs had been so horrendous for him, as they were not suitable to be used with Dravet Syndrome, no wonder Matthew was so unhappy and suffered so much with life threatening seizures. We also know now that Dravet can respond very well to ketogenic therapy and that was the treatment he had needed but had been denied for so long. Instead he had been put on a cocktail of drugs that were not suitable for his condition.
A keto break
He was eventually weaned off the MCT ketogenic diet in August 2007 and the seizure numbers never increased from what they were when he was on the diet. The only slight problem we had was that they increased in length of time slightly. With that in mind, I discussed things fully with Professor Cross and we decided to try him back on a very small dose of Epilim, which is a drug recommended for Dravet.
Although at the time it felt like I was taking a step backwards, understanding his diagnosis made it clear that he did need something to keep things under control to give him the best quality of life possible, be it drug or diet. We decided that as he had been on diet for 6 years, we would give him a ‘keto break’ for a year and try him on a little Epilim and then review after a year.
Matthew is still on that keto break today at the age of 26 (and still living happily at home with me I hasten to add!) as he takes 600mg of Epilim twice a day and that was enough to bring the seizures he had left back down in length of time to about 40 seconds. This we could deal with and it didn’t affect his quality of life. He has no terrible side effects and for Matthew, this is HIS therapeutic dose of medication. If ever things changed and went downhill, then I would have no hesitation in putting him back onto ketogenic therapy and weaning off the medication. Monotherapy is always my goal for Matthew.
Thank you to Emma Williams, MBE, Founder/Trustee/CEO of Matthew’s Friends Charity Global and Director of Matthew’s Friends Clinics for sharing her family’s story.
This blog post was submitted by SK Life Science, Inc., the lead sponsor of the November 2020 Epilepsy Blog Relay.
As many of you are aware, even today, people living with epilepsy can face stigma and discrimination due to their seizures, and many feel their seizures have a negative impact on overall quality of life. 2
Productive and honest discussions about epilepsy have become even more important during the COVID-19 pandemic, as social distancing requirements have limited in-person medical visits. Whether it’s virtual or in person, here are some important tips to guide your next discussion with your doctor.
1. Explain the reason for your visit.
Is this a checkup, or is there something specific you need to address? Without this information, your healthcare provider (HCP) may not have the full picture and can’t provide the help and guidance that is needed.
Why it’s important: According to the STEP Survey, 65% of patients and 63% of caregivers say a seizure event triggered a visit to the doctor, while only 25% of HCPs believe a visit is triggered by a seizure event. 1
2. Record and report the number of seizures you’ve had since your last visit.
HCPs need the real numbers to ensure you get the best possible care and have the right treatment plan in place. Keep a log of all seizures to bring to your next visit.
Why it’s important: While 73% of HCPs and 83% of caregivers believe patients report a high percentage of their seizures, patients actually say they report only 45% of seizures, according to the survey. The primary reason for not reporting them? Patients say the seizures weren’t serious enough to mention, or they just forgot. 1
3. Ask any questions you have about your current treatment or other options you may want to explore.
You are in charge of your health, and gaining information about epilepsy will empower you to make decisions about your own care with your HCP. Write questions down ahead of your visit, and ask follow-up questions as needed.
Why it’s important: 97% of HCPs say they explain the benefits of the treatment they recommend to their patients, but only 41% of patients and caregivers say their HCPs do so, according to the STEP Survey.1
4. Describe how seizures have interfered with your everyday activities and the overall emotional impact of living with epilepsy.
Living with epilepsy has a real emotional impact. In addition, seizures can affect how you work, drive, do schoolwork or chores. Make a list of your concerns ahead of your visit. If your HCP fully understands the challenges you’re facing, they can provide better care based on your needs — and help you find the right tools, resources and services.
Why it’s important: According to the survey, most people with epilepsy just want to feel “normal.” Yet in the STEP Survey, 58% of caregivers and 47% of patients have had to take time off work due to epilepsy, and over half of patients feel it is disruptive not being able to drive. Approximately 80% of patients and caregivers reported feeling some form of isolation due to epilepsy, and over half of patients reported a very or extremely negative impact of epilepsy on physical, financial and mental/emotional health.1
5. Share your real-life goals with your healthcare team.
Whether it’s wanting to start a family, live on your own or drive a car, by explaining your personal goals to your HCP, you can partner together to work toward achieving them.
Why it’s important: In the STEP Survey, 81% of HCPs somewhat or strongly agreed that patients don’t communicate their real-life goals to doctors — while less than 50% of patients somewhat or strongly agreed. 1
For information about the survey, visit WebMD.com/EpilepsySurvey. To make the most out of the next doctor’s visit, download a helpful guide (available here) for your discussion with your doctor.
*About the STEP Survey
SK Life Science, Inc. engaged Kantar Health to develop and field a 40-minute online survey of 400 adult patients with epilepsy and 201 caregivers of adult epilepsy patients, and a 45-minute online survey of 258 healthcare providers (including 96 epileptologists, 112 general neurologists and 50 nurse practitioners/physician assistants). 1 The study was fielded from February 7 to March 27, 2019. 1
 SK Life Science, Inc. and Kantar Health. (https://www.webmd.com/epilepsysurvey) “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019.
 World Health Organization, Epilepsy Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/epilepsy (https://www.who.int/news-room/fact-sheets/detail/epilepsy). Accessed October 6, 2020.