Precious
Age: 23

My name is Precious, and I am 23 years old.

My sickle cell journey has been quite contrasting from most stories, in terms of diagnosis. I wasn’t fully diagnosed with sickle cell anemia until I was in my first year of university. I was born in Nigeria, but my parents neglected my condition. Luckily, I never experienced any pain since the common symptoms of sickle cell disease (SDC) did not present themselves in a drastic and severe manner while I was growing up. I was just always told to drink more water because I looked dehydrated and always had a yellow tint to the whites of my eyes. I only really experienced fatigue and shortness of breath during physical activities and was very prone to fainting, but I always classified those experiences as symptoms of iron-deficiency anemia. 

My high-school years were some of the most defining moments of my personal journey, as I experienced the most pain and discomfort as a result of the disease. I was in and out of school frequently because of acute crises. Even then, being as stubborn as I was, I was never hospitalized. I had just accepted that every couple months I was going to experience excruciating pain to the point of being bed ridden for days at a time. This negatively impacted my mental health at home and at school because I felt very distant and alone in my struggle. I felt like no one would understand what I was going through, so I often suffered in silence and would cry myself to sleep in hopes that the pain would subside when I woke up. SDC has always been a very private and invisible disease for me, which made it very difficult to communicate to friends and teachers after being absent for days at school. I managed my episodes all through high school by taking Tylenol and just bracing the debilitating pain in my abdomen, chest, bones, and joints. Needless to say, and I’m sure most sickle cell patients can relate, this disease forces you to build an unimaginable pain tolerance. 

Since my full diagnosis in my first year of university, I have gained a wealth of knowledge and information about the condition and forced myself to come to terms with the reality of living with SDC (which can be a very difficult thing to do). My awareness and accessibility to the right resources only started a few years ago due to the stigma surrounding this disease. I was privileged to live in various countries growing up, but none of my medical records ever reflected this significant aspect of my health. In addition, my parents’ preconceived ideas about the disease, based on cultural notions that were imposed on them, also attributed to my lack of knowledge and research into what was causing me insurmountable amounts of pain. However, I have reached a point in my wellness journey where I no longer want to be uninformed about a health insecurity such as this. I have put more time and care into loving and appreciating the body I am in by recognizing that its strength and resilience has carried me thus far. 

Since receiving the right routine medication and treatment, my health has improved significantly (irrespective of the laser eye treatments, monthly blood tests and hospital visits). My health has come a long way, and I no longer feel like my condition is a limitation to achieving my goals. I am very grateful to the amazing healthcare providers and hematologists that have helped me along the way. I am also appreciative of an organization like NotJustYou for creating a platform for storytelling. Up until recently, no one really knew about my experience with SCD. I wasn’t ashamed or necessarily trying to keep it a secret, I just didn’t feel like there was a safe space and intimate community to share my struggles with. 

So, thank you for giving me a voice!