How I explain sickle beta-zero thalassemia to others

While I am not a board-certified hematologist, I am an expert on my personal experience with sickle beta-zero thalassemia. One might say I am “board-certified” in living with the condition!

When I disclose my illness to someone new, they often ask, “How is sickle beta-zero thalassemia different from sickle cell disease [SCD]?” Although I have answered this question many times, I frequently need a moment to think about how to explain it.

I usually answer in three steps:

Step 1: The basic science

I start with research-backed science. Sickle beta-zero thalassemia is a variant of SCD in which a person inherits a sickle cell gene from one parent and a beta thalassemia gene from the other.

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Step 2: Every person is different

I like the analogy that genetic mutations are like a typo. Let’s say you intend to type the word “definitely,” but instead you type “defiantly.” This drastically changes the meaning of your sentence.

SCD variants are similar; they change the “meaning” (or presentation) of the disease and lead to a variety of different symptoms, some of which I mentioned in my previous column. Even the same variant may manifest differently among individuals.

Therefore, my personal experience with sickle beta-zero thalassemia will look different from that of others with SCD.

Step 3: What sickle thalassemia looks like for me

I was diagnosed with sickle beta-zero thalassemia at 6 months old; therefore, life with this disease is all I’ve ever known. I’ve only ever understood my body through the lens of chronic illness. I say that not to garner sympathy, but to express that, for better or worse, I’m a pro at managing my symptoms.

Here’s what those symptoms look like for me:

Anemia: A common symptom across blood disorders, my anemia leads to extreme fatigue and dizziness while in motion (e.g., standing up too quickly).

Chronic pain: I view chronic musculoskeletal pain differently from my vaso-occlusive crisis pain because the former is less severe and occurs multiple days a week. As a child, my chronic pain was mostly in my lower back. Now, as an adult in my 20s, it’s mostly in my arms and legs.

Mental health challenges: Living with a chronic illness is painful, isolating, frustrating, and, sometimes, absolutely devastating. Going to therapy and taking antidepressants make my disease more manageable for me.

Increased risk and severity of infection: Sickle thalassemia lowers my immunity to illnesses and infections such as the common cold, influenza, and COVID-19. While many people my age may be able to treat these illnesses with prescriptions or over-the-counter medications, I’ve had to be hospitalized on countless occasions.

Vaso-occlusive crises: These are the pain crises that sickle cell is known for. I typically experience this pain in my stomach, chest, lower back, or legs. My last two hospitalizations for a crisis were due to unbearable leg pain; simply moving from the couch to the chair in my 500-square-foot studio led to inconsolable crying for the entire hour-long car ride to the hospital. For me, these episodes occur once or twice a year.

Acute chest syndrome: As a child, acute chest syndrome was one of the main problems that landed me in the hospital. Sometimes it occurred independently, but more often it was associated with a vaso-occlusive crisis. Acute chest syndrome often resembles pneumonia and is one of the leading causes of death in sickle cell warriors. On two distinct occasions, I felt chillingly close to that outcome.

Gallstones: No, gallstones don’t just affect older adults. Mine began causing increased but infrequent abdominal pain about three years ago. I was in so much distress that my doctor removed the gallstones last April.

I hope this column provides some insight into my experience with sickle beta-zero thalassemia and that, together, we can continue exploring the nuances of this variant.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.