Iron Man, childhood and hormones: visiting scholar reflections

From October 2023 to August 2024, I conducted my research project entitled Childhood and hormones. Congenital adrenal hyperplasia: social science perspective, at CBSS.

What is congenital adrenal hyperplasia?

For a six-year-old Iron Man (The nickname he chose during our conversation), congenital adrenal hyperplasia (CAH) is a collection of bacteria in his belly. You can't get rid of them, even if you're a monster with spikes, because you can't poke bacteria. Iron Man knows that he can protect himself from it by taking white pills, and if he does not have them, he could “lose consciousness.”

For an anthropologist, CAH is a social fact, a multidimensional experience related to the body, language, and social expectations. It's a story about the relationship with the medicine, about gender, sexuality, children's rights, secrets, stress, and the experience of illness in the age of the internet.

From a medical perspective, CAH is a rare genetic disease characterized by insufficient production of cortisol, and the excess androgen production. The most common form of CAH is life-threatening, however, regular pharmacotherapy enables individuals to lead normal lives without significant complications. Since cortisol is a hormone essential for life, treatment typically involves lifelong hydrocortisone and mineralocorticoid replacement, with higher doses required during periods of stress. 

Social science researches may know CAH as one of the intersex conditions (although some researchers, doctors and many patients do not consider people with CAH to be intersex). CAH is associated with varying degrees of virilization, meaning the masculinization of the female body due to excess androgens. In girls (individuals with a uterus and XX chromosomes), this typically results in the abnormal development of external genitalia, which is noticeable at birth. Although rare today, there are instances where girls with CAH are mistakenly identified as boys at birth. 

Bioethics and medical law specialists recognize CAH as an important area of discussion, particularly because a significant number of girls born with CAH undergo surgical correction of their genitalia within the first two years of life. While many activists and human rights defenders argue that, unless there are urgent medical reasons, such surgery should be delayed until the child is able to give informed consent, many doctors and the majority of parents of children with CAH support early genital surgery.

Research elements

Before coming to Edinburgh to continue my research project on the social aspects of CAH, I conducted fieldwork in Poland. I talked to patients, including a few children, as well as parents and doctors. The interviews focused on daily life with chronic illness, managing treatment, and gender-related issues. My time at the University of Edinburgh, engaging in conversations with interdisciplinary scholars, not only allowed me to process the collected data but also gave me the opportunity to ask my research materials new questions. 

• How patients can negotiate medical treatments with doctors in the era of social media, and in the context of Polish medical paternalism? 
• What is the role of cortisol in contemporary culture? What is the role of stress today, and what does stress mean today?
• What is the non-medical purpose of early genital surgeries in children? What factors contribute to the decision-making process regarding surgery? 
• How can and should anthropology engage with the voices of parents and patients with CAH? To what extent can we expect parents of children with chronic illnesses to be willing to challenge the binary order? Are they willing to take risks for the sake of social change?
• What is the role and position of the child in the discussion about early genital surgery? How to hear the voice of a child with CAH? 
• How can the voice of the child be effectively heard? Should and how to talk to children about sexuality in anthropological research? 
• What is it like to be a child with CAH in Poland compared to the UK? 

These examples of questions illustrate how one rare medical condition can serve as a social lens through which various biosocial phenomena can be explored. For answers to these questions and more, please follow my articles on CAH, which will soon be published in Polish and English.

My work was supported by the University of Warsaw under New Ideas Programme, Excellence Initiative–Research University; and National Agency for Academic Exchange under The Bekker NAWA Programme.

Further information

Magdalena Radkowska-Walkowicz, University of Warsaw (external link)

Childhood UW research team, University of Warsaw (external link)