Ufuoma
Age: 24

I am Ufuoma Muwhen, a girl who was diagnosed with sickle cell disease at age 2 and battled it for 16 years. Over those 16 years my family and I went through several traumatic experiences. Even though I was the one with sickle cell and I was the one who was going through the excruciating pain, it was like the rest of my family felt it too. Having sickle cell meant that my family and I had to adopt a lifestyle in which we were always on red alert, and always had to to be prepared to face the worst. Throughout this time, I felt as though I could never fully enjoy good moments because I was constantly reminded that at any moment something could go wrong. I would often hear a little voice in the back of my head telling me to be “careful of having too much fun because you might get a crisis”—that voice being my mom.

Just after my 18th birthday, I was blessed to be given the opportunity to undergo a Reduce Intensity Bone Marrow Transplant. The pre-transplant experience was emotional draining and scary. Mostly because I was constantly in fear of what could go wrong. The transplant was relatively new to Canada at the time so you couldn’t just go online and google/watch YouTube videos about it. The week prior to my stem cell infusion was physically exhausting as a result of the chemotherapy and radiation treatments. The day of my transplant was a nice relief since the process was similar to a blood transfusion. I could best describe my post-transplant experience as a long road trip to a destination you’ve heard of but never seen. Some of the biggest challenges I encountered were the side effects such as constipation, nausea, vomiting, weight change, fatigue, hair loss, skin discolouration, and many more.

To most people who read or hear about this, it may seem pretty scary and daunting- but it is absolutely no comparison to one sickle cell crisis.

Beyond the physical challenges, the transplant had a huge effect on my mental state. Being distant from all my friends and family for 100 days was hard. It felt like I was watching life go on without me through a window. I also felt like there was no one else who fully understood what I was going through. But I noticed that on the days that I allowed myself to think more positively, I was happier and felt better physically.

I enjoyed the little milestones I reached during the process as well. I remember my mother telling me how milky white my eyes were for the first time in 18 years. I’ll never forget the first time I got to go for a walk outside after being restricted a hospital room, apartment or car for weeks. Before transplant, I spent my whole life struggling to breathe and in that moment I could breathe normally for the first time.

This transplant was more than life changing, but it’s sad that families have to sacrifice so much for a loved one to be free. Not everyone is able to put their lives on hold for 3 plus months, pack up and relocate. For myself and my family it was difficult at first to figure out where I would stay for the 100 days away from home, and my mom had to take those days off work, many of which she could not be paid for. When she attempted to find to retrieve income from her insurance company, it was almost impossible for her to take out even a small amount of the money she had been paying for years. 

This tough and long journey with & without sickle has pushed me to create this organization. Eventually, I reached a point when I was tired of settling in the grey area that lies between the patients and the less-than-perfect healthcare system, especially for patients with sickle cell disease. So I present to you NotJustYou, a place where we can build community around sickle cell.