How good doctors can positively shape young minds in sickle cell disease

Recently, I’ve been writing more scientific articles, and for some of that research, I’ve been going back through scientific papers and looking at their references. One name I came across was my former doctor, Swee Lay Thein. It made me stop and think about how much she influenced the trajectory of my life and career.

At the time, our consultations probably seemed fairly standard. But I remember her asking me what I wanted to do with my life and what my goals were. Back then, I wanted to become a doctor and be involved in science and research. A big part of that came from wanting to give back to the community.

When I was younger, I wanted to help children like me who had sickle cell disease and were in the hospital. I thought having a doctor who genuinely understood what they were going through would be one of the most amazing things I could do.

Thein was one of the first doctors to encourage me to think that way. She was also one of the first doctors who explained sickle cell disease to me beyond the pain and the vaso-occlusive crises. She explained the genetics, what my blood results meant, and what was actually happening inside my body. I remember thinking, “Oh, so that’s what that means.”

It sparked something in me. It made me curious about my own condition rather than just seeing it as something that happened to me.

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I also remember her being interested in why my fetal hemoglobin levels were relatively low, yet I wasn’t experiencing the number of crises you might expect. Now, as an adult, having gone back and read more of her research, I understand why that was interesting. Some of her work has focused on fetal hemoglobin and its relationship with sickle cell disease and crisis frequency.

But that experience taught me something I’ve come to appreciate even more as I’ve gotten older: Sickle cell disease is incredibly complex. Two people can have the same diagnosis, even similar genetic characteristics, and still have completely different experiences.

Finding my own path

Looking back at my own life, it’s interesting because I never actually became a doctor. But I did become a scientist in my own way. I went on to earn a master’s degree in public health, worked adjacent to research, and spent much of my career supporting people with sickle cell disease.

I write for Bionews, the publisher of this website. I write evidence-based articles. I do advocacy work. I find myself constantly returning to research and asking questions about sickle cell disease. And I don’t think that’s a coincidence. I think a lot of it started with those conversations I had with Thein when I was younger. That’s why I think it’s so important to recognize the influence doctors and nurses can have on their patients, particularly young ones.

When you’re a young person living with sickle cell disease, you might not have many role models who have the condition. You might not know what is possible for your life. You might see only the hospital, the pain, the medications, and the appointments.

Then you might meet someone who represents something you can aspire to.

I wasn’t going to become Swee Lay Thein. I wasn’t going to follow the same path she did. But she helped me realize that I could have my own path, and that path has taken me to some incredible places. You never really know what impact a conversation will have on someone. A consultation that feels ordinary to a healthcare professional might be something a young patient remembers for the rest of their life.

I think there’s something for those of us living with sickle cell disease to learn: Ask questions. Don’t just accept a general comment like, “Here’s your medication, take it.” Ask why. Ask what your results mean. Ask why your experience might be different from someone else’s.

Be curious about your own body and your own condition. When you understand your condition, you can become an active participant in your care instead of feeling like everything is happening to you.

Not every healthcare experience I’ve had has been positive. But the doctors and healthcare professionals who made me feel heard, understood, and encouraged have genuinely shaped who I am today. Thein and her team are among them. So when I came across her name again while researching an article, it was a powerful reminder that life really does come full circle. A conversation that probably felt quite ordinary to her at the time helped shape who I’ve become as a man, as a professional, as someone who works around research, and as someone who continues to advocate for people living with sickle cell disease.

And for that, I’ll always be grateful.

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.