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For Genetic Illness, A 'Cure' Can Be A Conundrum


San Antonio resident Sheila Black and two of her children have a genetic illness called X-linked hypophosphatemia, or XLH.

In her opinion piece "Trying to Embrace a 'Cure'," recently published as part of the The New York Times' Disability series, Black writes: 

"...to be human often entails finding ways to make what appears a disadvantage a point of strength or pride. XLH does not shorten life-span. It makes walking difficult, and we XLHers suffer more aches and pains than most people. We also look different. When I was a child, this was the main reason I longed for a cure — so I could look like everyone else. Now it is the part of my XLH I cling to a little stubbornly, why I hesitate and wonder: Who would I be without my XLH? Who would my children be?

What is a superior person? What might be lost in the rush toward creating one?"


Kim Johnson is the producer for Texas Public Radio’s live, call-in show The Source. She is a Trinity University alum with bachelor’s degrees in Communication and Spanish, and a Master of Arts Degree from the School of Journalism at the University of Texas at Austin.