Joe Mudukiza, aged 28, received a diagnosis of sickle cell disease at the tender age of two. However, it wasn’t until last year that the illness completely overwhelmed him, leaving him desperate for a medically assisted death. Despite his earnest wish, those around him vehemently oppose his decision. He is now on the brink of traveling to Belgium for the procedure, with only one hurdle left to overcome.
“For the past five months, thoughts of my impending death have consumed my mind. I’ve tried to maintain a facade of strength that those around me are familiar with, but the pain has been chipping away at that facade. For the first time in 26 years, I’ve chosen to reveal my vulnerability to the world. I’ve resolved to seek peace, if it exists, in the afterlife. While my decision may seem unconventional to my community, my culture, and the laws of my country, I must ask myself: Would I rather endure unbearable pain that torments every fiber of my being?
Since my diagnosis with sickle cell disease more than two decades ago, pain has been a constant companion, intruding upon my life uninvited. Despite growing accustomed to this reality, I was unprepared for the intensified suffering that accompanied my life since April of last year. My world was turned upside down, and even the pain that was once familiar to me now shocks me on a daily basis.
I’ve exhausted all options to alleviate my suffering, clinging to the last semblance of hope. The internet provided me with a final lifeline — euthanasia, commonly known as mercy killing. I added this option to my bucket list during one of my worst pain episodes. At that time, I was residing with my cousin in Kasarani.
I vividly recall being surrounded by nurses attempting in vain to locate my veins, while the pain escalated with each passing minute. This ordeal lasted six agonizing hours, prompting me to research euthanasia. I’ve watched countless YouTube videos of individuals who opted for assisted dying and devoured every piece of literature available online. I’ve even memorized some of the relevant laws.
Although euthanasia isn’t an option in Kenya, I reached out to the Association for the Right to Die with Dignity in Belgium. Their response was affirmative, and I’ve commenced the process, albeit without support from those around me.
All my Kenyan doctors, who are required to sign certain documents before the medical procedure can be performed in Belgium, have declined to participate in my journey towards death. They maintain that their duty is to preserve life, not end it. I conveyed this setback to the Belgian physicians, who assured me that I can still proceed without their signatures. I simply need to demonstrate, beyond doubt, that I am mentally sound and that this is my final recourse.
My mother only learned of my decision five days after I posted on Facebook detailing my intentions. She was deeply disappointed and implored me to confide in her when burdened with sorrow.
However, I fear my burden is too heavy for her to bear. Unsure whether I’ll honor her wishes to visit her, as she desires. She insists that she alone should decide on my journey to Belgium and that I shouldn’t proceed without her consent. She believes I’m the strongest person living with sickle cell disease and cannot fathom my decision.
But even the strongest soldiers know when to retreat. When I broached the subject of an interview with her, she declined.
During my upbringing, I adhered to a strict medication regimen without understanding its necessity. I often questioned why I, out of my five siblings, was the only one subjected to such a desolate routine. My mother’s response was always that I was a special child. I felt special until I learned there was more to being special than met the eye.
The facade of my mother’s white lie crumbled when I enrolled in high school, leaving me utterly defenseless. Unable to adhere to my medication schedule as diligently as before, I became frail and was compelled to change schools. I transferred to a boarding school closer to my village.
It was there that I delved into literature about my condition. Though I was a full-time student, my time at school felt more like part-time in every sense. My pain intensified, and I frequently found myself absent from school. Whenever I experienced a crisis in school — a scenario that occurred all too often — my peers would shun me.
Many of them were unfamiliar with sickle cell disease, so my life became akin to soft wax, molded and twisted according to their whims. They labeled me a devil worshipper and accused me of being involved in a cult. Initially, these epithets brought me to tears, but I grew accustomed to them and cared less about people’s perceptions.
Despite numerous absences, I managed to secure admission to university, where I studied English and Literature. While I aspired to become a journalist, my father envisioned a teaching career for me. I pursued my passion for drama but eventually abandoned it due to my illness. A highlight of my career occurred in 2019 when I penned
a play chronicling my life and that of other sickle cell patients. The play was performed by students of Kapsabet Boys High School, a moment of immense pride for me.
I’m a father. Long before my illness took its toll, I was energetic and devoted to community service. Growing up, I was isolated from society and denied the ordinary pleasures of life. During my service to the community, I encountered children in need of assistance.
Consequently, I legally adopted five children, in addition to my biological child. My children are aware of my condition and have provided invaluable support during my crises. In their presence, I feel a sense of purpose and responsibility, a reason to persevere. I wonder what their reaction will be when they learn of my decision.
What a pain crisis feels like
Living with sickle cell disease presents a unique set of challenges, where even the simplest tasks can become monumental feats. Each day begins and ends with a pervasive fatigue, regardless of how much rest one manages to get. During a crisis, the pain is indescribable, akin to the sensation of one’s skin being torn away, and shards of broken glass piercing through veins.
Communication becomes excruciatingly difficult; every word uttered feels like swallowing razor blades. It’s a struggle to articulate thoughts when pain clouds every mental process. Productivity grinds to a halt as pain intensifies, rendering one unable to focus or think clearly. The only respite comes from opioid medication, albeit temporarily, as it plunges the user into a numbing trance.
Mobility becomes restricted, and leaving the house alone becomes a daunting prospect. A caregiver becomes a constant companion, providing essential support during moments of crisis. The experience evokes memories of a loved one’s battle with cancer, a reminder of the fragility of life and the toll illness can take.
For many living with sickle cell disease, maintaining a facade of strength is essential, especially in the eyes of their children. However, behind the facade lies a deep-seated desire for a dignified end. The relentless deterioration of health only adds to the urgency of finding relief.
Medical interventions offer a glimmer of hope, but financial constraints present insurmountable barriers. Minor surgeries such as central venous catheterization and vascular necrosis surgery are essential for improving quality of life, yet remain out of reach due to lack of resources.
Participation in clinical trials and advocacy efforts for better healthcare have yielded little progress. Despite pushing for legislative change and forming support organizations, the path to better treatment remains elusive.
In the face of such overwhelming challenges, the desire for a peaceful end becomes a prevailing sentiment. The plea is simple: to be allowed to die with dignity, free from the grip of relentless pain and suffering.
Living with sickle cell disease is a daily struggle, where each moment is a battle against pain and uncertainty. It’s a journey marked by resilience, but also by the harsh realities of limited treatment options and financial barriers.
Yet, amidst the struggle, there remains a glimmer of hope; hope for a future where medical advancements make relief accessible to all who suffer. Until then, the fight continues, fueled by the unwavering determination to live with dignity and to find peace in the face of adversity.
Lawyer’s Perspective
The World Medical Association defines euthanasia as the deliberate act of ending a patient’s life, which is considered unethical even when requested by the patient or close relatives.
Dennis Nkarichia, an expert in medical law, elucidates the various forms of euthanasia, including passive euthanasia and treatment withdrawal. Passive euthanasia entails a physician providing assistance to a terminally ill individual by prescribing a drug that may hasten their death without taking direct action.
In Kenya, such practices are colloquially referred to as “death tourism” due to the absence of legal provisions, prompting individuals seeking euthanasia options to travel abroad. Currently, no African country permits euthanasia, leading individuals to seek assistance elsewhere.
Withdrawal of treatment, while similar in concept, requires cautious consideration. Nkarichia emphasizes the legal distinction between euthanasia and criminal offenses like murder or manslaughter.
Given the constitutional rights to personal autonomy and decision-making, individuals have the authority to decide on euthanasia for themselves. However, state intervention may occur in cases of attempted suicide. Despite this, there exists no legal framework for medical tourism between countries.
Regarding the disposition of remains, arrangements vary based on agreements between patients and hospitals offering euthanasia services. Some opt for cremation, while others donate their bodies for organ transplantation.
Nkarichia expresses skepticism about the imminent evolution of Kenyan euthanasia laws, suggesting that any changes would likely arise from private initiatives rather than legislative efforts. He proposes seeking legal recourse through the High Court for individuals seeking alternative options for end-of-life care.
About sickle cell disease
Sickle cell disease predominantly affects regions along the coast and western Kenya. Dr. Sophie Uyoga, a research scientist at the Kenya Medical Research Institute, explains that in the country, the primary approach to managing the disease is through medication rather than definitive treatment.
“Medications like Hydroxyurea are available, but accessibility remains a challenge for many due to cost,” she notes. Nevertheless, these management strategies have proven effective, leading to improved survival rates among patients.
Dr. Uyoga emphasizes the significance of the Ministry of Health’s updated guidelines on newborn screening. “Many parents are unaware of their carrier status for the condition. Early identification allows for timely management interventions, enhancing prospects for a better quality of life,” she elaborates.
Advancements in treatment options continue to evolve, with recent breakthroughs in CRISPR-Cas9 gene editing technology. Dr. Uyoga likens this approach to a “cut and paste” function, albeit in a laboratory setting.
“When an individual has sickle cell disease, there’s a genetic alteration that causes red blood cells to assume a crescent shape,” she explains. “This technology enables precise editing of genetic material, either by removing the mutated gene segment, inserting a normal gene, or activating fetal hemoglobin production, which is more efficient in oxygen transport.”
Despite its promise, Dr. Uyoga highlights the exorbitant cost of the therapy, approximately USD 2 million, posing a significant barrier to access. Clinical trials have shown promising results in preventing sickle cell crises, a primary concern for patients.
“Long-term monitoring is necessary to assess any potential side effects,” she cautions. “Gene editing may inadvertently affect other DNA segments, warranting further research into its implications.”
While optimism exists for broader availability of the treatment, Dr. Uyoga acknowledges that widespread access may not be imminent. “As scientists, our priority is to enhance the immediate well-being and longevity of sickle cell patients,” she concludes.
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