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Rachel's Story

EARLY LIFE AND DIAGNOSIS:

My name is Rachel-Anne de Guzman. I currently live in BC, but I was born in the Philippines in 1978. My mother immigrated to Canada in the early 1980’s to study and work as a nurse, with my father and I immigrating to Canada in 1982. Shortly after we arrived in Canada, my sister, Sharon was born and we all lived in BC, where my father worked as a Corrections Officer and my mother worked as a Dialysis Nurse.

When I was 11, I was diagnosed with epilepsy. It was first detected after I collapsed while performing at a school concert. After being rushed to the hospital, I underwent many tests, which included an MRI, CT, EEG and blood work. Eventually, these tests indicated that the cause of my collapse was that I suffered from epilepsy, although the tests were unable to show conclusively where in my brain my seizures originated.

Soon after being diagnosed, while taking part in a swimming lesson, I had a seizure and nearly drowned. I was rescued by lifeguards who had to provide me with CPR in order to resuscitate me.

In the years following my diagnosis, both the frequency and types of seizures I was suffering from increased. The frequency increased to an average of four major seizures per month and the types of seizures I was suffering from grew to include tonic-clonic, atonic, absence and focal impaired awareness seizures.

In the early years, I was prescribed a variety of anti-epileptic drugs (AEDs), all which provided me with little benefit and led to some serious side effects. I also tried the Ketogenic Diet but had to end it as it proved unsuccessful in treating my condition.

Following my diagnosis, my parents had difficulty accepting that I had epilepsy, as our family had no prior history with epilepsy. So, in order to receive a second opinion, my parents took me to the United States to see an Epileptologist and, following further tests, they were able to confirm the original diagnosis that I had received in Canada.

Although I know that my parents loved my sister and myself equally, part of my problem as a child with epilepsy was the fact that I believed I wasn't good enough as I failed to meet the high expectations of my parents, especially in comparison to my sister who was both academically and otherwise a high achiever. This led me to become indecisive and lose confidence in myself, resulting in low self esteem which I am still working hard to overcome to this day.

SCHOOL:

Post-diagnosis, I attended many schools, which included two elementary and four secondary schools. The reasons I changed schools as often as I did was mainly due to the constant disappointment of my parents in my academic performance and their hope in finding a school for me that could accommodate my needs and improve my performance. Constantly changing schools caused me considerable stress by making it difficult in trying to meet their expectations academically, keeping friends and always feeling like an outsider. Despite all of these challenges I did eventually graduate from high school.

Following my high school graduation, I pursued a career in early childhood education and as a care aide. I chose this career as I anticipated that I would greatly enjoy working with children, seniors and persons with disabilities. Despite my own disability, I was able to graduate with a long-term care aide diploma from Gateway College and a Certificate in Early Childhood Education from Douglas College. My choice of career has proven to be a good decision as the joy I have received in working with and helping others has been a great benefit in my life.

EMPLOYMENT:

I found it more difficult than I had initially expected to find a long-term position of employment in my chosen field. At first, I handed out a lot of resumes and completed a number of interviews all with little confidence of landing full time employment in my field. I did eventually land a few jobs at daycare centres which I greatly enjoyed but unfortunately, I had several seizures on the job site which eventually led me to being laid off due to the perception of my employers that I posed a risk both to the children I supervised and myself.

At this point I began to lose hope that I would ever be able to find stable employment in my field. With this added stress, my frequency of my seizures increased. At this point my Epileptologist helped me successfully apply for disability support.

Starting in 2017, my seizures improved significantly so that, by 2019, with the approval of my Epileptologist, I began working part time as a care aide with certain conditions.

MY FAMILY:

I met my now-husband Jhun in 1996. We began living common-law in 2000 until we married in 2018. We have two daughters together, Joanne-Faith, born in 2000, and Kiyanna-Gail, born in 2005.

I have taught both of my daughters’ seizure first aid so that if I had a seizure they wouldn’t panic and knew what to do. We are blessed and eternally grateful that both children are healthy and have shown no indication that they have inherited epilepsy.

Joanne-Faith is now 19 years old and is working two part time jobs in order to pay for her tuition to become a psychologist. Kiyanna-Gail is now 14 years old and is an excellent student who is also a competitive dancer.

MY HEALTH NOW:

Currently, my health is pretty good. The type of seizures that I am primarily experiencing have been identified as refractory and nocturnal. In recent years, I have only experienced absence or focal seizures on the rare occasion. I am experiencing two to three seizures per month with each seizure lasting a few seconds up to a minute and a half. Through experience and consultation with my Epileptologist, we have begun to identify the most likely primary triggers are stress, lack of sleep, worrying and overthinking. The AEDs that I am currently taking to control my epilepsy include Aptiom, Lamictal and CBD Hemp Oil, as well as a few vitamins and supplements. I also take Lorazepam after each seizure in order to prevent more from occurring.

The three stages of a seizure are aura, ictal and post ictal. During the aura stage – the physical and emotional events someone experiences prior to a seizure – I usually tend to say “Help, I think I’m going to have a seizure” or I call out a person’s name and then have quick blackouts, similar to an atonic seizure. During the ictal stage – the seizure itself – I experience uncontrollable jerking movements of my legs and arms, make garbled noises, and most often have loss of bladder control. During the postictal stage – the recovery stage – I experience headaches and am very confused about where I am and what just happened. I am also very sleepy and feel embarrassed due to my loss of bladder control and everyone staring at me.

In 2014, I went to Calgary to undergo related testing in hopes of identifying the areas of the brain where my seizures originated. The results of this testing were reviewed by a team of as many as ten epileptologists. Although they were unable to determine the precise location of my seizures, they were able to determine it was coming from somewhere in the occipital, frontal and temporal lobes. Based upon the results of that testing. the team of Epileptologists recommended that I undergo brain surgery; however, I opted not to go ahead with the surgery.

As far as the future is concerned, I am currently on the wait list for an invasive EEG video monitoring and possibility of temporal lobectomy surgery.

CHALLENGES AND COPING STRATEGIES:

There were many challenges I encountered and coping strategies I developed in dealing with my epilepsy. The challenges were injuries, some emergency visits to the hospital and the dentist, poor memory, lack of concentration, depression, anxiety, embarrassment, the cost of medications and having to rely on public transit.

The coping strategies I have developed that I believe help me include looking up inspirational quotes, praying, talking to members of my support system, attending an epilepsy support group and doing research about epilepsy in order to increase my knowledgeable about my condition.

WISDOM AND MOTIVATION:

I hope my story can serve to educate others who struggle with their own disabilities so they will be able to enjoy life as I now do. I have learned, and I truly believe that life is a precious gift. I have also come to understand that although an obstacle such as epilepsy can pose a significant challenge, for anyone who is able to conquer that challenge the confidence that you gain can become your greatest strength. In the end I say to have faith that you will become stronger, wiser, and more confident.

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