On May 5, 2022, The Wall Street Journal Weekend Edition showcased an article called “The Surprising Legacy of a Genetic Disorder” by Dr. Anne Skomorowsky. The essay summarizes the history of Fragile X and the evolution of understanding around the Fragile X premutation condition and its impact through one family’s experience.
Dr. Skomorowsky writes about the differences between being a carrier of Fragile X versus a carrier for other genetic conditions.
While being a carrier for a genetic condition typically does not pose any risk for the carrier themselves, being a Fragile X premutation carrier is different. Being a Fragile X premutation carrier — male or female — comes with the potential for various associated conditions that impact female fertility, mental, and physical health. The more we understand about the Fragile X premutation condition, the more healthcare and treatments can evolve to positively affect quality of life for these men and women.
The impact of being a Fragile X premutation carrier is important for the individual and for families living with Fragile X. It underlines the important of awareness of Fragile X and genetic testing, as well as access to quality healthcare. According to the WSJ, they have a national print audience of 4.3 million and a digital global audience of 67.5 million unique readers per month.
We are excited that millions of people are now more aware of Fragile X because of Dr. Skomorowsky’s essay and continue to hope and work for better awareness of all Fragile X-associated conditions.
Do you want to learn more about these conditions? Check out our links below.