An Interview With Lena Harvey

We interviewed community member Lena Harvey. She shares some of her experiences with sickle cell.

When did you learn that you had sickle cell?

I was born in 1985. However, my diagnosis came 4 years later in 1989, once the statewide newborn screening was implemented in the state of Illinois. Prior to this, I can recall having severe back pain, which is why it is important to know your and your partner's sickle cell status before expanding your family.

What was it like to grow up with sickle cell? Were your friends and teachers understanding?

An enormous portion of my childhood was robbed because of sickle cell disease.

While other children were outside playing, running, jumping, riding bikes, I was inside, sitting, watching, sleeping, hurting. Although I was a curious student and consistently at the top of my class, keeping up in school was made increasingly difficult due to the physical nature of the experience.

I found myself chronically fatigued and in pain so often that it became easier for me to drop out socially than to try at relationships with classmates. I kept a very small group of friends who were all understanding of my condition and pushed me to graduate from culinary arts school in 2005 with honors, even after having a life-altering vaso-occlusive crisis (VOC) during my time there.

Along the way, I came across very understanding teachers and school staff. However, for each one of them, there was someone eager to dismiss my illness, thus dismissing me. These cumulative experiences have taught me to treat everyone with kindness, dignity, and respect, for I need not a reason to do so. I’ve also learned that however a person feels about my having been born with SCD is not my baggage to claim.

What symptoms do you usually experience?

Until just recently, my life was consumed with fatigue, pain, and the ever-looming threat of VOCs.

I also experienced depression and anxiety stemming from the trauma of living with SCD. I’ve had numerous side effect symptoms from previous medicines, such as chronic constipation, fissures, rebound headaches, and intense induced itching, among others.

I was often sick, having daily pain, wearing wrist braces due to tendonitis, a posture corrector for back pain, compression socks for the swelling in my feet, along with layers upon layers of clothes for warmth.

My joints ached and popped constantly, for which I was using Voltaren all over my body, throughout each day. This was all on top of me taking long-acting morphine and Percocet for breakthrough pain. Since starting the first drug made specifically for SCD, Oxbryta (voxeletor), I have felt a drastic decrease in all of the aforementioned symptoms.

What treatments have you tried or work well for you? Do you use any alternative/ complementary treatments? What has your experience been with these treatments?

Over the years, I've taken several different medicines for my SCD. The 2 treatments I have had the best effects from are hydroxyurea and Oxbryta. I have required blood transfusions in the past, though not frequent. By far, Oxbryta has made the most difference in my daily life. I immediately felt a drastic drop in the pain and fatigue, within 1 week!

What inspired you to create a YouTube channel? What are your goals for your YouTube channel?

At the same time as the COVID-19 pandemic was stealing away lives and upending our routines, I was feeling quite peculiar. I was getting so frustrated with it all wondering, "Was this it for me?" I could not imagine making it to a ripe, old age if this is what I would have to endure to reach it.

Even though all of this was happening and I couldn’t see a way out, inside, spiritually, I felt like I was about to burst out of my skin. I began taking Oxbryta in March 2021 just after receiving the Covid-19 vaccine, and I suddenly rose up from my sickbed. I felt like I had been resurrected. The pain and fatigue being lifted off of me were enough to open my world up and release me from the debilitating clutches that are sickle cell.

Lena Lavish the Queen Warrior Herself was born. I felt an enormous need to share my testimony and help other warriors find their key to self-transformation. I’ve dedicated my new YouTube channel to sickle cell awareness and to all of those who thought their lives might never amount to much – don’t believe the lie.