My Turner Syndrome Story and The Immortal Life of Henrietta Lacks

Katie Health Leave a Comment

“”Once scientists knew how many chromosomes people were supposed to have, they could tell when a person had too many or too few, which made it possible to diagnose genetic diseases. Researchers world-wide would begin identifying chromosomal disorders, discovering that patients with Down Syndrome had an extra chromosome number 21, patients with Klinefelter syndrome had an extra sex chromosome, and those with Turner syndrome lacked all or part of one.”
The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks is the story of a woman and her family. It is the story of how studying cancer cells changed the world of medical research. It is an historical record of cellular research as seen through the example of Henrietta Lacks’ cells.

I have Turner syndrome. My body has been thoroughly studied by researchers at the National Institutes of Health. This passage made me cry. I started thinking about dates. In 1938, Henry Turner wrote the first paper describing Turner syndrome. In 1956, as a result of studying Henrietta Lacks’ cells, scientists were able identify 46 chromosomes in the human cell (prior to that, they thought there were 48). In 1986, I found out I have Turner syndrome. As a result of my diagnosis, I was immediately treated with hormone replacement therapy and bone density medication. I was told my ovaries were scar tissue and would never produce eggs. The diagnosis changed my life. The diagnosis was possible because of Henrietta Lacks. Perhaps the research journey to identifying 46 chromosomes could have taken a different turn, and Turner could have taken a different path to identifying missing sex chromosomes, but the author of this book was suggesting a direct path between me and Henrietta. Our stories became intertwined at that point.

This book touched me deeply as a woman living with Turner syndrome.

I am reminded every day of physical realities of our bodies. Because of Turner syndrome, my heart might be pumping blood the wrong direction as the result of a defect in my aorta, my bones might be lace before I am 30, my kidneys might fail before 40. These were all things I heard happened to women with Turner syndrome. I would not know the reality of my physical condition until my research experience at the National Institutes of Health at the age of 37. Henrietta’s story resonated with me in that she also was too young to be confronted with the limitations of the human body. Her story was different then mine in that she had to endure unimaginable pain during her cancer journey, and ultimately die far too soon. Receiving a diagnosis for a chronic or fatal condition shapes how you see the world.

Henrietta’s story made me think about mortality and immortality. Most babies that have Turner syndrome do not survive. It is estimated that only about 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner syndrome. I struggle with these facts. I can not remember when I did not think about my own mortality. Henrietta’s story also made me think about immortality. She made me consider the ways we survive after we leave our physical bodies. She survived in the life of her cells. She survived in the lives of her children. She made me think about how I will survive after I leave my physical body.

Henrietta died not knowing her cells would be used for science. Henrietta’s husband allowed an autopsy thinking that research on Henrietta’s cells could possibly save his children from eventually dying of cancer. The specifics of that decision were never fully understood by the Lacks family. None of the Lacks family ever financially benefited from Henrietta’s cells, though the research community saw fortunes made. None of the Lacks family ever found medical benefit either because they never had consistent insurance or resources to allow for medical care. That is wrong to me.

I have felt the tension that exist between the value of science and the emotional and physical investment research requires of participants. I am not sure all scientists understand the weight of their gaze. Several questions must be continually asked by the research community to honor research participants. Does the work harm the research participant in any way? Does the research participant fully understand the work? Does the research participant truly understand they have the ability to leave the work at any time? Being mindful of the humanity of the researched is crucial to ethical scientific progress.

I am grateful to have read Henrietta’s story. Her story gives vital detail to the scientific record. Her name and her journey must be recorded. Human subjects protection must be followed. I understand my Turner Syndrome story a bit better through the lens of her immortal life.

 

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