Beverly Ndukwu

Hello,

My name is Beverly Ndukwu. I would like to take a moment to share with you my experience living with sickle cell disease.

I was diagnosed with sickle cell when I was 2 years old. This is when I experienced my first crisis. In my fathers’ words, I was on my deathbed, due to a lack of knowledge of the disease. At the time we were living in Brandon Manitoba, and no one knew what was wrong with me.  Word spread through the Nigerian community of the state I was in, and luckily my soon to be pediatrician was able to diagnose and treat me with a life-saving operation.

The years after that are somewhat of a blur. I admittedly was very oblivious to my disease. All I knew was that I was sick a lot, had many Emergency Room visits, and a few hospital stays, sometimes combined with blood transfusions. I didn’t know why I felt pain so often because I didn’t hurt myself.  Pain just became a part of my life.

Fast forward to grade 10. I was 15 years old. First crack at high school, I was almost done with the school year and gearing up for exams. Then, I have another crisis that lands me in the hospital, and I end up missing my exams. I remember a conversation I had with my mathematics teacher. He told me he was going to average my grades and not to worry about the exam. We talked a bit more and he asked me what sickle cell anemia was. Not sure why it took me 15 years to realize this, but at that moment I felt like an idiot for not being able to explain to him what my illness was. From that point on, I decided to educate myself.  It was that simple question that turned out to be one of the best things for me to do. Educate myself about Sickle Cell disease.

Sickle Cell affects people’s lives in many different ways. I have a coil in my brain from an aneurysm that bled, severely low hemoglobin, scar tissue on my lungs from multiple chest crises, and a slightly enlarged heart from working hard to oxygenate my body. In my family of five kids, three girls and two boys. My little sister and I were the only ones with the disease. Unfortunately, my little sister passed away from complications of the disease when she was seven years young. It was devastating to watch my sister battle with the disease, and an absolute heartbreak to see her go. She is the reason behind my gratefulness to live the life I live. I know that if I keep fit, hydrate, eat properly, and reduce stress in my life, I’ll remain fairly healthy.

 From my experience, here is what a crisis feels like. I remember one very vivid memory because it scared and shook me to the core.  I woke up in the middle of the night, to this pressure and pain so overwhelming I couldn’t catch my breath. The pain in my chest was so intense, I was barely able to call for my parents.  I literally could not breathe and thought I was going to die. We later found out I had an acute chest syndrome, which is a life-threatening SCD complication that causes severe chest pain, fever and breathing difficulty. That was my first of many. I don’t remember the exact time frame, but I believe I was in the hospital for five days. It took a while because I wasn’t allowed to leave the hospital until I re-learned how to breathe properly. I defaulted to taking shallow breaths to compensate for the pain I felt in my chest. Beside educating myself, I understand the importance of educating the community around us. I used to struggle and often used to get upset whenever I’d go to a hospital or doctor’s office, mention to them I have sickle cell and see a blank expression on their face. It made me wonder how they were going to care for me when they don’t even know what they’re dealing with.  In that sense, my trust in the healthcare system over the years has wavered. Now, I’m trying to turn that anger into something positive. Here in Winnipeg, I’ve started The Sickle Circle of Manitoba.  A nonprofit that will raise awareness, educate people, and have a support group for all of those living with SCD.  It’s really nice to talk with people facing the same challenges as you, sharing experiences, understanding and learning along with you. I know it helps.

Now that you know part of my story, here is what I want you to remember about me. I’m overall a very happy person. I’ve created a wonderful life for myself with a support system that sees me through my highs and picks me up during my lows, and for that, I am so grateful.

My jobs entail working in a diagnostic mammography clinic as a mammography technologist, as an x-ray technologist at a chiropractic clinic, I teach kids acting classes, and I am also an actress. So, I keep busy but fill my days doing the things I love. I keep a positive attitude about my situation. I don’t give much power to sickle cell in my life. It’s not something I think about every day.  Sometimes I forget about it until I have an appointment or if I get sick. Sickle Cell is my disease. I own it. It does not own me or define me in my everyday life.

In sharing my story, I’m hoping to encourage awareness about this disease and hoping to inspire changes that will positively affect the lives of those living with this condition. People with sickle cell disease are sometimes referred to as silent sufferers, because of many different issues, but one being culture. I want to address this because if you have sickle cell, you were born with it. It is not something I will ever be ashamed of, nor is it something I feel the need to hide.  Hiding it hinders you in so many ways.  Sicklers are some of the strongest people I know for the strength they have, constantly going through everyday life in pain.  So, continue to stand with us as we fight with more determination to live happy, productive lives.

Beverly Ndukwu

Winnipeg Manitoba