The beauty and pain of growing older with sickle cell disease

The idea that all sickle cell patients die before 18 is a myth

Oluwatosin Adesoye avatar

by Oluwatosin Adesoye |

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Here in Nigeria, growing into adulthood with sickle cell disease used to be considered an impossibility.

Sadly, people like me who were living with sickle cell disease were labeled as “abiku,” which means “born to die soon.” I, too, was told by many that I wouldn’t survive beyond the age of 18. But I refused to let this bleak prognosis and myth define me. My Christian beliefs made me optimistic that I would defy the odds. It left no room for doubt, regardless of anything. I also made sure to prioritize my health and take proactive steps to manage my condition.

The disease’s historically high mortality rate fueled the myth that all sickle cell patients die before adulthood. Before medical advancements, many patients did die in early childhood. However, this didn’t mean that every person with sickle cell disease died young. There were always exceptions, people who beat the odds and lived longer.

The idea that all sickle cell patients die before 18 has always been a myth. Thankfully, medical advancements have since disproven it.

As much as medical advancements have changed over time, sickle cell disease still affects life expectancy. However, thanks to better therapies, many sickle cell patients live into their 40s, 50s, and 60s, and I have even seen patients who lived into their 70s.

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A testament to resilience

The true beauty of growing older with sickle cell disease lies in triumphing over prevailing myths and societal expectations and defying all odds. The satisfaction of winning a personal battle over sickle cell disease and thriving despite the challenges makes growing older with the disease a truly beautiful experience. I am a successful medical doctor thriving with sickle cell disease, and every year, I joyfully celebrate my birthday as a victory over it and a testament to my resilience.

As beautiful as growing old with sickle cell disease is, it also comes with immense pain and other challenges. We call ourselves warriors because we fight to live every day. The harsh reality is that this disease is a progressive disorder, which means that as we age, the fight for survival intensifies, and the complications we face multiply. Despite the victories, the journey is grueling.

Patients growing older with the disease have led to the discovery of many new complications; the higher you go, the tougher it usually gets because of the ability of the disease to progressively damage organs. During my adult years, I’ve had to live with complications such as chronic pain syndrome, chronic fatigue syndrome, avascular necrosis, cardiomegaly, infections, sickle cell crises, bone complications, physical disability, and more. In contrast, during my childhood, all I had to deal with were sickle cell crises, acute fatigue, and infections. The majority of my health issues arose during adulthood, which is evidence that sickle cell disease can be particularly demanding for adult patients with moderate to severe conditions.

Balancing work, family, and personal life amid these challenges is a daunting task. Handling multiple complications requires money, time, resources, and a good support system. If not carefully managed, the stress and pressure can take a toll on one’s physical and mental health. For people without a supportive work environment, it can cost them their jobs.

Some individuals point to older warriors like myself as evidence that the disease is not a significant concern, suggesting that it’s unnecessary to consider genotype compatibility when starting a family or preventing sickle cell disease. They claim that having children with sickle cell disease is not a big deal.

Some use thriving sickle cell warriors to downplay the disease’s impact. However, this perspective overlooks the immense challenges we face, the pain we endure, and the ongoing battles we fight daily. No one should use our longevity to minimize the importance of genetic awareness and disease prevention. Instead, they should serve as a testament to our resilience and a reminder for continued support and understanding.

I am fortunate to have the strongest support system in my family. As a medical professional, I benefit from a supportive workplace where my colleagues and supervisors prioritize my health and actively enable me to rest when necessary.

In conclusion, growing older with sickle cell disease is a monumental journey filled with challenges and triumphs. Despite facing immense pain and complications, we continue to defy the odds, showcasing resilience and strength in the face of adversity. To all warriors going through different complications that affect your physical body and mental health but still thrive and succeed through it all, I want to tell you I love and admire you. You are strong, you are amazing, and sickle cell has nothing on you. Keep winning.


Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Delores Florence avatar

Delores Florence

I have a son who suffers with/from Sickle Cell disease. I do my best to be an advocate for this disease because of my personal experience with it. My son has lost an eye from this disease and has had a total hip replacement. He suffers greatly from painful crises, but does his best not to go to hospital. God blessed me about 25 years ago to start a support group and we do our best to help those affected by this disease. Having a support group is very much needed for someone experiencing this disease. We also do our best to educate the community.

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Terri avatar

Terri

I am an older person (55) living with Sickle Cell Disease. It's a journey and I am still fighting the good fight.
I do not let this disease define me. I am a Sickle Cell Warrior in every sense of the word!!

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