Inner Lobe Epilepsy

I was diagnosed with inner lobe epilepsy. The year before the actual diagnosis of my condition, was one of the scariest times of my life. The uncertainty of what was happening to me was life changing. From being an outgoing, fun loving, happy person, I became an introvert. I would limit my time outdoors and my home became my safe haven. I was too afraid to go out in the fear of having an "episode". Basically fear took over my life. After my condition was diagnosed and the medication had kicked in, the "episodes" stopped and my life has gone back to its normal self.

-Victor Galvao 

Husband, Father and Welding Manager

"I became an introvert. I would limit my time outdoors and my home became my safe haven. I was too afraid to go out in the fear of having an "episode"

Petit Mal and Grand Mal

I have been living with Epilepsy for 18 years. When I was first diagnosed it was very difficult for me to tell my friends of my condition, especially because I was starting high school and did not know how they would react. I made a conscious effort to start telling friends and family about epilepsy and describe the difference between petit-mal and gand- mal as I am susceptible to both, it was also important that they know what to do should I have a seizure.

 

As I became a woman I started to wonder how would my epilepsy affect my pregnancy? Going for regular checkups as well as EEG testing it was discovered that I was at my most healthiest and did not have a seizure during the EEG where as previously I would have short bursts of petit-mal seizures.

 

My son is now 4 years young and keeping me on my toes. I would like to empower women living with the epilepsy condition. I drive every day to work and have a happy lively, loving family. I take my medication on time, every time and have put reminders on my phone just in case I do forget and make sure to avoid triggers that may bring on a seizure i.e flashing lights, lack of sleep, anxiety and stress. Some stressors are unavoidable ,with time you realize which stressors impact you the most. Whether it is balancing a career and family or the next big exam or event in your life. You just do your best and everything else will fall into place. There are varying types of epilepsy and it is therefore vital to ask as much questions as possible at your doctors appointments and research as much as you can.

-Linda Dias Menezes 

Wife , mother , projects clerk and student 

 

*Golden rule!

Never drive unless you have been seizure free for at least 12 months, and / or with approval from your neurologist.

"Some stressors are unavoidable ,with time you realize which stressors impact you the most. Whether it is balancing a career and family or the next big exam or event in your life. You just do your best and everything else will fall into place."

Life – Through the eyes of a disabled person.



This thing called life. It’s interesting, don’t you think? From the day you are born, people will hope for a doctor, an engineer, an accountant or even an athlete! You are made to be something, someone, anything but yourself.

But what if you don't have the two hands required to operate on another person, or a mathematical brain to calculate taxes or legs to be the best athlete? What then? Does society ostracize you rather than getting to know you? Labeling you as a crippled, disabled freak of nature, bewitched by the devil, and many other scared names.

I was born with mild cerebral palsy on the right hand side of my body. Due to this, the functionality of my right hand and leg is not what it should be.  I went for a number of treatments that were there to correct what was deemed "broken", I presume this was society's way of not accepting me as I am.

Growing up I faced challenges most children don't. Besides acceptance I was constantly teased and bullied because of the way my right-hand looked or the way I walked. I was put aside and told "not to hurt myself". My strengths, abilities and positive attributes were overshadowed by my disability, because that is all people saw.

Further on, I developed epilepsy in the form seizures. I was put on to medicine that had a number side of effects, some of which I still feel today, even after being off it for six years. Besides being ostracized for my disability, I now had to deal with being alienated for my epilepsy, this I assume is because of a lack of understanding. However, this all changed when I started speaking up.

I had reached a point in my life where I was tired of being alienated. It was at this point where I had to open myself up to the world. I had realised that no one was going to come knocking on my door, I had to open the door, walk out and tell my story.
In opening myself to the world, I had to realise and understand why the world was so scared to get to know me, and to see past my disabilities. Firstly, I explained, to all that were interested and to those that weren’t, what cerebral palsy and epilepsy is, then I explained, who I was, what I stood for and believed in, and that my disabilities did not make me who I am, but rather I decided who I am. In doing so, I made people see that I was just as “normal” as them, and they were just as “disabled” as me. Once my message had been delivered, they began seeing the person behind the disabilities. They then saw that I had so much to offer the world, that I was academically strong, that I was a socialite, a leader and above all, a person.

My message to the world is this, open yourself up and let the world see and understand who you are, whether you are deemed “normal” or “disabled”. Personally I like it when people ask me about my disabilities and the back story behind it, it shows that they understand and don’t just assume. The best way to open yourself up is to interact with people who are different to you, therefore I always advocate for people to do community service.

I was lucky enough to have a number of supportive structures in my life, from my family, to my friends and number of other people who have been influential in my life. Showing support, understanding and love is all one can ask for.

My name is Muhammed Yaeesh Cassim, I am a student currently studying a Bachelor of Arts in Psychological Counselling, an administrator, a tutor, a Mentorship Co-ordinator and Vice-Chair for the Psychological Society of South Africa Student Division, and yes I also have a disability.

“#DontOstracize #RatherFimiliarise #Grow #HashtagForADifference #PsychStudentsServing #WatchThisSpace 

"Besides being ostracized for my disability, I now had to deal with being alienated for my epilepsy, this I assume is because of a lack of understanding. However, this all changed when I started speaking up."

Misdiagnosis and unanswered questions.

"I was home schooled in a time where that was taboo an we had to go to extreme measures because the best nuero's had no idea what was really going on."

*please feel free to share your story with us

Hi its Nastassja or just Tash.  

I am anything but ordinary. I am an endless mystery and I think that is the perception people get from me. But in actual fact i am a seeker of facts, truth, justice and I fight very hard for what is right. 

I have struggled with epilepsy my entire life, but was continually misdiagnosed up until recently. Which means I was home schooled in a time where that was taboo an we had to go to extreme measures because the best nuero's (neurologist) had no idea what was really going on. 

I have finally found the right doctor and despite my challenges I have advanced qualifications in psychology,  IT an Project management and I am now using these skills to ensure the stigma, fear and cultural influences surrounding epilepsy is corrected in such a manner to help, patients, care givers and communities. And most of all I would like to be there to " ask Tash" whenever there is anything epilepsy related i can help with. There are probably 10 other people with the same question, too afraid to ask. I look forward to my path with Epilepsy Awareness South Africa. Remember we are always stronger together!

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Epilepsy Awareness SA is a registered Non-Profit Organisation with Registration Number 197-665 NPO 

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