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    Readers react to blog post about transgender community

     

    I must admit I was disappointed to read your July 5th article in Urology Times, “The transgender community: Urology has a role and responsibility.” In reading your academic and military background, you have an opportunity to use your distinction in a positive and thoughtful manner to educate your professional community on the accuracies of Congenital Adrenal Hyperplasia (CAH). As a grandparent of a precious, smart and happy 19 month old girl with CAH I could not miss this opportunity to reach out and share our story. Although CAH is extremely rare I did recently have a chance to meet a Navy Chief with two adorable daughters affected by CAH and I know they too would appreciate more knowledgeable medical professionals in the Navy. I hope it makes a difference on your understanding and approach to CAH going forward.

    I recognize your article was to heighten social awareness and sense of responsibility among the urology community on a sensitive and politically charged issue surrounding debate after the North Carolina legislature passed a law that bars people statewide from using bathrooms that do not match the gender listed on their birth certificate. I was saddened by the broader use of transgender and inaccurate portrayal of CAH and negative implications. Transgender is a less clinical term, referring more to gender identity and gender expression than to sexual orientation or physical sex characteristics. CAH is an inherited condition that affects the production of hormones from cortex of adrenal glands, which are part of the endocrine system, not the “plumbing.”

    When CAH occurs the adrenal glands cannot properly make the hormones “cortisol” and “aldosterone” and instead overproduce “androgens.” Thus, CAH is usually characterized by deficiencies in cortisol and aldosterone production and excesses in androgen production. Each of these problems can damage health and have life-threatening consequences. For most, like myself and other parents or grandparents of CAH babies, the shock comes not only from the realization that the child has a potentially life-threatening condition, but also from the notion that the condition is one that no one seems to have ever heard of or knows much about. So please understand my passion and reason for responding to your article has more to do about the opportunity to not categorize CAH as a gender concern, but the safety and social well-being of others like my precious granddaughter.

    I have included your article comments below:

    “Politics aside, and whether or not we even like it, all of us who have gone through a urology residency have spent hours memorizing the steroid pathway and have been grilled on the manifestations and implications of specific inborn errors of metabolism such as congenital adrenal hyperplasia (CAH). Most of us only had to deal with this in residency, although I'm sure a certain percentage had the pleasure of discussing the topic with a certifying examiner in Dallas—a much more anxiety-provoking scenario.

    “Further, even small-town plumbers like me have done cystoscopies on women with penises, and we've all been called to the NICU to examine a newborn baby with a severe case of CAH whose gender was nearly impossible to determine—a boy with a small penis and bilaterally undescended testicles or a masculinized girl with clitoromegaly? To this day, I have no idea how physicians decide what gender to write on the birth certificate in situations like that.”

    Our story began 8 days after birth during early newborn diagnosis; although we had a positive newborn screen there were a series of potentially serious medical mishaps and missed diagnosis at a major children’s specialty hospital by ER and endocrinologists. This also included an early physical exam by an actual pediatric urologist that failed to identify a single genitourinary opening but thankfully we obtained a second opinion by a nationally recognized CAH urology expert. These babies do not have “penises” that require plumbing but someone that can accurately assess the anatomy and identify and understand fusion or clitoromegaly and can explain to the anxious parents it is an endocrine problem as well as potential surgical intervention options and risks.

    As I have compassion for those individuals who self-identify with a gender different to what their birth certificate says, it is a totally different issue from individuals born with intersex conditions that affect their anatomy but not their gender identity. With CAH, a baby girl born with ambiguous or atypical genitalia is still an XX female. No one needs to “decide” on or assign a gender. Confusing the two issues is an extreme disservice to any scared parent who is struggling to find relevant information on a rare, life-threatening and life-long medical condition. It is especially damaging to the parent of a baby girl with CAH who is struggling to make the right surgical decision that will affect their daughter for the rest of her life. So while I appreciate the responsibility you feel to support the transgender community, please be considerate of making sure the CAH community is provided with factual, evidence-based information as well.

    Registered Nurse and Grandmother to Salt Wasting Congenital Adrenal Hyperplasia Toddler

    Virginia

    Next: "I echo the recommendations of Dr. Rosevear that we need formal policy statements from our societies."

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