Osasere
Age: 24

Hello everyone, my name is Osasere Odiase. I am a 24-year-old warrior who is 8 months post-transplant and on the verge of becoming sickle cell-free.

Growing up I did not know that people with sickle cell disease were referred to as warriors until I was 22 years old. I am getting ahead of myself, let me take you back a couple of years before I turned 22. Before the age of 22, sickle cell disease was a limitation for me because to me at the time it represented everything I could not do, and that was preventing me from being a “normal” child and having a “normal” childhood. I grew up with sickle cell disease in both Canada and Nigeria. In both countries, I experienced excruciating pain crises mainly in my joints, my limbs, my chest and pretty much all over my body. I got to a point where I patiently always awaited the pain crisis, especially when I tried to engage in “normal” activities such as hiking, sports, swimming and anything I was told not to do as a sickle cell warrior. Yes, I was a little bit stubborn in adhering to the non-strenuous activity rule for sickle cell warriors. Truthfully I just wanted to be given the opportunity to be a child.

Now let’s fast forward to adulthood and sickle cell disease. I don’t know about you but being an adult with sickle cell disease is a completely different ball game. As a child with sickle cell disease, you are treated like an egg, so delicate and precious. However, as an adult you face discrimination, you are accused of being a drug seeker and for many near-death experiences due to the implicit bias of some health care professionals. As an adult, I had to advocate for myself not once, not twice, but every single time I was in the emergency room and cared for by doctors and nurses who were not my main hematologist or lead sickle cell nurse. I am a nurse by profession and I have always worked outside of Calgary, Alberta, which is the city that hosts my main hematologist and lead sickle cell nurse. Countless times I had to call my lead sickle cell nurse from another city to plead with the ER doctors and nurses to willfully administer the right medications to help with my excruciating pain. A pain I like to describe as being poked with a needle and hit with a hammer both at the same time. I was beginning to get fed up and never really envisioned a life outside of sickle cell disease and the discrimination from the health care system that came along with it.

To give you a brief summary of what discrimination with sickle cell disease looked like for me, picture being hit with a hammer and poked with a needle, now picture a nurse telling you that pain is insignificant and your tears because of that pain is too loud and will not be attended to until you “calmed” down. That is one of the examples of a time when my pain was downplayed. The icing on the cake was when I was kicked out of the emergency room by a nurse when I still had pain medications in my system. She said get up, we need the bed. To her, I was a drug seeker, not a sickle cell warrior experiencing a pain crisis. Minutes after I was forced to leave the emergency room despite being drowsy from the pain medications, I got into a car accident. I am not saying this to receive sympathy, but to emphasize the struggles of being an adult with sickle cell disease. Enough of the sad story. Let me tell you about the day my life changed forever.

Some people might think my life changed forever when I had an allogeneic stem cell transplant on September 30th, 2021. Although that holds a significant amount of truth, I would say my life changed forever on January 16th, 2020. This was the day my lead sickle cell nurse Trudy Sale invited me to look over a pain tool the sickle cell clinic was developing for sickle cell patients. I remember not thinking too much about that day until I began dissecting the pain tool and made useful corrections. That was the day I felt having sickle cell disease was not so bad and could be used to empower other current and next-generation sickle cell warriors. Fast forward to January 20th, 2020, I was invited by my hematologist and lead sickle cell nurse to join the sickle cell disease advisory board. That was the day my life changed forever. September 30th, 2021 was the day God answered my prayers in the 4 walls of the hospital room. It was the day that led to me being one of the directors of the Sickle Cell Advocate board of Calgary and the Founder and CEO of Sickle Cell Warriors Collective Corporation.

With the Sickle Cell Warriors Collective Corporation, I have been able to unify warrior voices from all over the world through storytelling. I went from knowing only 1 sickle cell warrior to getting acquainted with over 300 warriors from all over the world. The bone marrow transplant was my lifeline to a life I prayed for. A life where I can not only use my nursing experience to help warriors navigate the health care system but also actively be involved in the sickle cell space. My life is a testament to God’s goodness!