Twenty-three Years Before Figuring out She had Sickle Cell
Blood Disease, Chronic Pain, COVID-19, Kidney Disease, Mental Health, Rare Disease
Issues and Challenges
Leslie has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Disability, Discrimination (nonmedical), Financial Assistance, Invisible Illness, Medical Discrimination, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care, Underserved Community
Unlike other sickle cell warriors, I grew up not knowing I had sickle cell. When I was born I did undergo the newborn screening that included testing for sickle cell but the results were not fully explained to my parents.
When my parents were preparing to take me home from the hospital, a nurse told them that I would be ok and that I just couldn't live at high altitudes. At the time of my birth, the doctors announced that I was a girl, there was general shock as my parents thought they were having a boy. I wonder if somehow in that confusion, the sickle cell diagnosis wasn't relayed properly or if it just wasn't relayed at all.
As a child I participated in normal activities and loved dancing. Growing up I was a ballet dancer and even thought I might become a professional dancer. In hindsight, I remember being in pain on a regular basis while dancing, after dancing and especially when putting ice on my feet and other things that dancers do. I now realize that these were more than likely sickle cell crises.
One day after work when I was 23 years old, I came home and noticed tingling pain in my legs during dinner. I mentioned the pain to my mother who suggested that I take a warm bath. Once I was in the bath, the pain intensified and I lost feeling in my legs. My family then carried me to the car and took me to the emergency room.
Once we arrived at the emergency room, I explained that I was in excruciating pain and they began to examine me. At this point, I passed out. I did not wake up again for a few days. During that time, the medical staff were having a tough time diagnosing me. They had even called in the CDC because they weren't sure if there was an outbreak happening.
After a few weeks of hospitalization I was discharged but still didn't have a concrete diagnosis as to what happened. I was eventually diagnosed with Parvovirus, which I attributed to eating lunch at a Chinese buffet at lunch the morning of my ER visit.
At this point, my mother began talking to her primary doctor who was a hematologist. After listening to my mother describe my symptoms and what my doctors were saying he asked if they had tested me for sickle cell. I then had an appointment with him for a blood draw and he sent the blood to be tested for sickle cell.
I finally had a diagnosis after over a month of illness and daily blood draws for hemoglobin levels. It was at that point that I realized I knew little to nothing about what sickle cell was and how it would effect me.
I was 23 years old and now found myself trying to find a hematologist that saw adult patients with sickle cell. I learned at this time that many hematologists only see pediatric patients and if they do see adults, they concentrate on oncology patients.
I eventually moved to New Jersey and continued my search for a hematologist there. I had a sickle cell crisis shortly after moving and was admitted for in-patient treatment. During my hospitalization, I was seen by a hematologist who agreed to take me on as a patient and treat me. I saw him regularly for 3 or 4 years. However, his practice merged with a practice that concentrated on cancer care and he was no longer allowed to see me as a sickle cell patient. That left me, again, without care for my sickle cell.
Since I had spent more of my life in New York, I decided to look in New York for a team of doctors since I was more familiar with how things worked there. After doing years of research on what I needed as a sickle cell patient, I was able to put together a team of doctors that includes a primary care, hematologist and other doctors for various organs effected by sickle cell.
During the time between my diagnosis, researching the disease and how to treat it, and being able to put together a healthcare team that works, I discovered just how hard it is for adults with sickle cell to receive quality healthcare. As a result, I began attending sickle cell and blood disorder conferences and really looking for opportunities to advocate around sickle cell care and treatment, quality transition care for pediatric sickle cell patients and health disparities.
I advocate so that patients can have an easier time finding access to care. I also advocate for better, comprehensive care for sickle cell patients that includes newborn screening and surveillance, eliminating racist and discriminatory care and comprehensive care teams to improve the lives of those living with Sickle Cell Disease.
My Motivation and Inspiration
Everyday Sickle Cell Warriors fight the effect of the disease on their bodies, from chronic pain and fatigue to organ damage. Unfortunately, we also find ourselves fighting against disparities and discrimination in healthcare. Going through my own journey has led me to stand up and speak up for myself and others through advocacy.