Determined to Not Let Sickle Cell Win – for my Daughter
Congressional District: CA07
Blood Disease, Genetic Disease
Issues and Challenges
ChiChi has encountered: Access to Medicine, Rare / Underserved Disease, Surprise Billing, Disability, Medical Devices, Medical Discrimination, Premium Payments, Social Security Disability
Hello. I’m ChiChi Nnoli, I was diagnosed with Sickle Cell Disease (SCD) Type SS at 6 months of age. I am also a mother of a young child.
Growing up, my experience was relatively atypical in terms of frequency of pain crises which is the hallmark of this debilitating condition. I was not in and out of the hospital like a lot of SCD patients normally are. However, growing up, I was unable to enjoy playing sports like my brothers and sister. I did feel like the black sheep and a burden in the family.
My parents are from Nigeria and I am first generation Nigerian-American and SCD in the culture is still a stigma and not talked about. I did not know anyone else with SCD growing up and it made life even lonelier as SCD is already a lonely disease.
Fast forward to my 30’s, during my pregnancy (with my first and only child) was when I started to experience more SCD complications. I developed a life-threatening complication, Acute Chest Syndrome, in my 3rd trimester and had to have an first exchange transfusion. I almost lost my life and my child’s life during that crisis. Since then, I would say my biggest daily issue living with SCD is the chronic fatigue. It has put debilitating limitations on my activities of daily living. As a result, I recently retired from work as an auditor after nearly 15 years.
Even though SCD is considered a rare disease, it is the most common genetic condition in the US. So it is very concerning that in this day and age that we don’t have enough awareness. We also lack quality care and treatment among us, Sickle Cell Warriors (warriors). In my last hospitalization, I had a kidney infection that triggered a Vaso-Occlusive crisis, which is the hallmark complication of SCD. However, when I arrived at the Emergency Department (ED), I was met with implicit biases. I waited five hours for my first dose of pain medication. The standard of care of SCD patients in the ED is to administer pain medication within sixty minutes of arrival. I was ignored and my pain was not taken seriously by nurses and doctors in the ED. This was the first time I was reduced to tears; I thought, as I waited in agony for hours that this pain is getting worse and it could lead to more serious complications. Because my pain was not taken seriously and treated promptly, my condition worsened and I ended up needing a blood transfusion. In my thirty-something years of living with SCD, this was the first time that I received such poor treatment in the ED. I hear about it from other warriors, poor treatment and care in the ED which still happening a lot but to experience it yourself, it was a rude awakening and very eye-opening for me.
And what's scary about pain crisis, which most of the ED staff really still don't understand, is that particularly as you get older, a pain crisis can lead to death. It is actually one of the leading causes of death in that 20- to 30-year-old period. More education and awareness is truly needed the ED. Many people who live with SCD also live with the anxiety that comes from anticipating a pain crisis. Anxiety-management is becoming a big part of my sickle cell regimen. Once a pain crisis begins, so does the stress of deciding whether or not to go to the ED, which is particularly anxiety-inducing for people with sickle cell disease. Research has shown that with more anxiety comes more pain in these situations. So, it’s key for those of us, as warriors, to keep that anxiety in check, but it’s also incumbent on healthcare providers to really have an understanding of what we’re dealing with, so that we don’t feel anxiety about coming into the ED, or other settings, to be cared for.
After that experience, which really shook me to the core and I said enough, warriors, we are human beings, and in our most vulnerable state should never be treated like this. This major experience has propelled me into patient advocacy world. I am involved in my local SCD community based organization. Sharing my story with others in hopes to bring more awareness, understanding and better treatment and care for myself and other warriors. My focus us is on advocating and bringing awareness, particularly in the in patient-provider relationship role in health equity to help in efforts to breakdown these barriers, educate and increase awareness for better (even just for the basic) treatment and care of SCD.
I also want to be an effective patient advocate for myself, because I deserve the best care. I am the sole caretaker for my young daughter and my daughter deserves a mother who health condition is being managed with the best care and treatment so I can be around for her.
Finding strength in God, to continue in this daily battle for me has been the key factor and what keeps me pushing through it and to lead a purposeful life despite limitations and being put into categories, that I can do all things through God who gives me strength. Even through many challenges as someone with SCD, my condition has only encouraged me to be “grateful for every minute.” Just be thankful for every moment that I have. When things get tough, I fall back on my faith in God and remember His promises for my life and the purpose He has given me and it keeps me going.
It all circles back to my ultimate motivation in life: my daughter. She keeps me going and striving to be the best version of myself.
My Motivation and Inspiration
My 7-year old daughter, Chizara aka SuperGirl.