Learning about sickle cell complications and associated fear

Living with sickle cell disease for nearly 38 years has taken me through various phases: an initial phase of cluelessness about sickle cell complications, a phase marked by fear of those potential complications, and the current phase, in which I’ve managed to conquer that fear.

During my childhood and early teenage years, my sickle cell disease diagnosis never provoked strong emotions in me, nor did it alter my identity. The only major complications I faced were sickle cell pain crises, which usually lasted about five days. These acute episodes, although recurring, were simply temporary challenges that I learned to overcome without significant impact on my sense of self.

A pivotal moment that evoked fear in me was a medical school lecture that taught me about the extensive list of potential complications associated with sickle cell disease. The lecturer’s detailed account of how the disease could adversely affect every organ in the body was a scary wake-up call for me.

He covered cardiovascular issues, including cardiomegaly, heart failure, cardiomyopathies, and sudden cardiac death; respiratory challenges, such as acute chest syndrome, asthma, pulmonary hypertension, and sickle cell chronic lung disease; and neurological complications, including stroke, seizures, memory loss, and other cognitive impairments.

The lecturer also mentioned renal complications, such as hematuria, enuresis, and renal failure; liver complications, such as hepatomegaly, sickle cell hepatopathy, and liver failure; and bone complications, including osteomyelitis, avascular necrosis, and bone deformities. And there was more: He went on to highlight infections, leg ulcers, insomnia, gallstones, and pregnancy and fertility complications.

The scope was daunting, and the realization that sickle cell disease could do all of these things to my body profoundly shook me, leading to a newfound fear for my health.

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Understanding this blood disease

With that lesson, I understood that sickle cell disease affects the blood, which ensures all body parts function properly. Insufficient blood supply can lead to cell or organ death. Moreover, blood carries vital oxygen and nutrients that are necessary for the body to function properly.

This understanding shed light on how this blood disease can adversely affect every body part, potentially leading to various complications. I also learned that the disease affects people differently, that not all patients will experience the same complications. This knowledge didn’t eliminate my fear, but the brief scare gradually dissipated over the next few weeks, and I got over it.

My apprehensions resurfaced and intensified, however, when I encountered some of these complications in my early 20s. From bone infections and deformities to depression and hypothyroidism, facing this array of challenges prompted thoughts of what might come next. The constant concern about the next potential complication became a daily burden.

My medical knowledge only deepened these worries, as further research and understanding of sickle cell complications exacerbated my fears. Of all the potential complications, my greatest fear was the possibility of my bone deformities progressing to a point where my mobility would be compromised.

Experiencing, confronting, and overcoming my greatest fear with determination and resilience played a crucial role in helping me conquer it. The experience of being bedridden for a year because of avascular necrosis (death of bone tissue) was a significant ordeal I faced head-on, becoming a testament to my inner strength. I believed that if I could gracefully navigate the loss of mobility, I could tackle any obstacle that came my way.

Overcoming the fear of complications

For those who grapple with fear about their illness, refusing to learn more about it is a counterproductive coping mechanism. Educating oneself about the complications, focusing on preventive measures, and effectively managing unavoidable ones when they happen are essential steps toward empowerment. Regular medical monitoring, adherence to treatment regimens, and proactive measures are vital in preventing complications, slowing disease progression, and addressing existing challenges.

Recent advancements in medical science have led to the development of various treatments, including disease-modifying therapies, gene therapies, exchange blood transfusions, simple transfusions, and surgical interventions aimed at preventing, delaying, or treating complications. However, it’s crucial to emphasize that the best way to manage sickle cell disease is to prevent it.

My journey with sickle cell disease has been marked by fear, challenges, and ultimately, resilience. By confronting my fears, educating myself, and actively managing my health, I’ve been able to navigate the complexities of this condition with a newfound sense of empowerment. The road ahead may be daunting, but with the proper knowledge, support, and proactive measures, living with sickle cell disease can be a journey of strength and hope.

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.