- He was born with the health condition.
- Despite challenges, he has never allowed the condition to define him.
- He spends approximately KSh12,000 monthly for medication.
In a world where many people struggle to find their purpose, Ramskie Duevela, 32, wears the hat of an independent photographer from Kenya, his photosensitive epilepsy notwithstanding.
His story is not the usual old wives’ tale, having made glass out of the very sand that would have otherwise buried him.
Despite being born with photosensitive epilepsy and undergoing all its banes, and having humble beginnings, he has used his condition as a platform to raise awareness and inspire others.
According to the Epilepsy Society, “Photosensitive epilepsy is when seizures are triggered by flashing lights or contrasting light and dark patterns. Photosensitive epilepsy is not common but it may be diagnosed when you have an EEG test.”
His story is one of determination, courage, and creativity.
Living with epilepsy has not been easy for Duevela. He had to change schools four times due to the condition, affecting his education.
He nostalgically recalls experiencing seizures at school, and his teachers getting scared of him as a result.
“They stopped punishing me, fearing I would get sicker, and this made me very happy,” he says.
His condition provided a free get-out-of-jail card at the time. His classmates, however, were not as amused.
He remembers their jealous and contemptuous stares, seeing as he was getting what they considered special treatment.
Chasing his dreams
Turning a blind eye to all this, Duevela made it to college, where he undertook a course in Photography for two years.
He fondly addresses his childhood dream of becoming a sports commentator, having been inspired by Jack Sylvester, but found his passion in photography while in college.
His condition has not deterred him from voraciously pursuing his dreams, seeing as the very trigger for his condition is what is putting bread on his table, and he encourages others to do the same.
Stigma and discrimination
Mr. Duevela is no stranger to stigma and discrimination.
Numerously, the two were dished out to him by people with little knowledge or understanding of epilepsy.
One such incident occurred when he had a seizure at the gym and got kicked out as a result because the owner felt uncomfortable.
His pivotal moment came when he applied for a job, for which he was overly qualified but got dismissed on the grounds of his condition being considered a liability.
Such instances have shaped him in several ways.
He has retreated into solitude, comfortably spending his days as an introvert.
“Epilepsy has given me a lot of insecurities, but I have thickened my skin to a point where the stigma and discrimination no longer bother me,” he says.
He has never let these obstacles define him. Instead, he has used photography as a tool to advocate for epilepsy and change the narrative around it.
Through his photography works, he captures people’s beauty and diversity while highlighting the struggles and triumphs of people living with epilepsy.
He uses his art to challenge stereotypes and misconceptions about epilepsy, such as the idea that it is not a real disability or that it is contagious.
He shows that people living with epilepsy are just like everyone else, with dreams, passions, and talents.
One of the most remarkable things about Duevela is his commitment to helping others. He inherently refuses to be defined by his condition.
He believes that self-awareness and finding one’s purpose are key to living a fulfilling life.
That to live a meaningful life is to help oneself first, then find a way to help others— that aligns with one’s agenda.
His agenda is to raise awareness about epilepsy and to empower others to live their best lives.
He hopes that his photography and advocacy work will inspire others to do the same.
Regardless of everything, one of the biggest challenges Duevela and other individuals with epilepsy face is the astronomical cost associated with managing the condition.
He spends at least KSh12,000 every month on medication, a cost that is not covered by insurance.
In Kenya, insurance for chronic conditions like epilepsy is inadequate, leaving people like him to bear the full brunt of medical expenses.
This has not stopped Ramskie from pursuing his passion for photography and using it to make a difference.
Duevela’s story is a testament to the power of resilience, passion, and self-awareness.
Despite the challenges he has faced, he has refused to give up on his dreams or let his condition define him.
Instead, he has used his passion for photography to make a positive impact in his community and beyond.
He is an inspiration to anyone who has faced adversity and wants to make a difference in the world.
He is a humble, strong-willed, and confident individual who has found his purpose in life.
Duevela is a remarkable individual who has shown that with determination, courage and creativity, anything is possible.
His story is one of resilience, passion, and self-awareness, and it serves as an inspiration to many.
As we celebrate his achievements, we should also recognize the need for better support and resources for people living with epilepsy in Kenya and around the world.
With greater awareness and understanding, we can break down the barriers that prevent people like Ramskie from realizing their dreams.
Word from medical expert
Dr. Erren Oyunge, a Pediatric Neurologist at the Moi Teaching and Referral Hospital, illuminates epilepsy as a condition, citing that it is a neurological disorder that affects about 1% of the general population.
It is characterized by recurring seizures or convulsions, which are sudden, uncontrollable movements or behaviors caused by abnormal electrical activity in the brain.
There are several types of epilepsy, each with different causes and symptoms.
Some of the most common types include generalized epilepsy, which affects both sides of the brain, and focal epilepsy, which affects only one area of the brain.
Other types include absence epilepsy, myoclonic epilepsy, and tonic-clonic epilepsy. The causes of epilepsy can vary and are often unknown.
In some cases, it may be caused by genetics, brain damage from head injury or infection, or a brain tumor. However, in many cases, the cause is unknown.
Treatment for epilepsy typically involves medication to control seizures.
There are several drugs available to treat epilepsy, including carbamazepine, lamotrigine, and valproic acid.
These drugs work by reducing the abnormal electrical activity in the brain. While medication can help control seizures, it may not completely eliminate them.
People living with epilepsy may still experience seizures despite being on medication.
Additionally, the drugs used to treat epilepsy can have side effects, such as dizziness, nausea, and drowsiness.
It is important for patients to work closely with their healthcare provider to find the right medication and dosage that works for them.
As a last ditch option, surgery is usually recommended, but it is not a guaranteed solution or cure.
First aid for someone experiencing a seizure includes making sure they are safe and protecting them from injury.
This can involve clearing the area around them of any sharp objects, cushioning their head with a pillow, and turning them onto their side to prevent choking.
It is important not to restrain the person or put anything in their mouth, as this can cause injury.
Epilepsy can have a significant impact on one’s quality of life, as seizures can be unpredictable and can limit a person’s ability to work, drive, or engage in other activities.
Those with epilepsy often face challenges such as discrimination, stigma, and social isolation due to myths and misconceptions surrounding epilepsy.
Myths and misconceptions
Some of the myths and misconceptions surrounding epilepsy that need to be eliminated, Dr. Oyunge says, include the belief that it is caused by demons or evil spirits, that it is contagious, or that people with epilepsy have an intellectual disability.
These misconceptions can lead to fear and discrimination, making it difficult for people with epilepsy to live their lives at full capacity.
It is essential to understand that epilepsy is a medical condition, not a character flaw or a result of personal weakness.
People with epilepsy can live full and productive lives with proper treatment and support.
Conclusively, epilepsy is a complex neurological disorder that affects many people worldwide.
While it can be managed with medication, it can have a significant impact on one’s quality of life.
By raising awareness of epilepsy and challenging myths and misconceptions, we can help improve the lives of those living with this condition.
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Additionally, it’s important to support research and advocacy for better treatment options and resources for people living with epilepsy.