Pain That Cannot Be Measured
Back to BlogFrom Substack

Pain That Cannot Be Measured

What 43 Years of Sickle Cell Has Taught Me About Who Gets Believed

Dr. Dédé Tetsubayashi|1 min read|May 16, 2026

Chronic Pain & System Failure

Vaso-occlusive crisis. Inadequate treatment. Racial pain bias. And the uncomfortable reality that gene therapy is not simply a medical breakthrough, but also a reflection of how profoundly existing systems have failed people living with sickle cell disease long before this moment arrived.

Las…

Read more

This is the preview Substack provides for this post. Continue reading the full article on Substack below.

Read the full article on Substack

This is a preview. Read the complete essay — and subscribe for every new field note — on Dr. Dédé's Substack.

Ready to act on this?

See where your organization stands on AI governance — or talk it through with Dr. Dédé.

Want more insights?

Explore more writing on AI governance, tech equity, and inclusive innovation.

Back to All Articles