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Rare Disease Daily #2: 11-beta-hydroxylase Deficiency

  • Writer: yannick-robin eike mirko
    yannick-robin eike mirko
  • May 10, 2023
  • 2 min read

Updated: May 11, 2023




The National Center for Advancing Translational Sciences describes 11-beta-hydroxylase deficiency as a Congenital adrenal hyperplasia (CAH). It is one of a group of disorders (collectively called congenital adrenal hyperplasia) that affect the adrenal glands. In this condition, the adrenal glands produce excess androgens (external gonad sex hormones). This condition is caused by genetic changes in the CYP11B1 gene and is inherited in an autosomal recessive pattern. There are two types, the classic form and the non-classic form. People with internal gonads with the classic form have ambiguous external genitalia with normal internal reproductive organs, those with the non-classic form of 11-beta-hydroxylase deficiency have normal genitalia. The early growth spurt can prevent growth later in adolescence and lead to short stature in adulthood. About two-thirds of individuals with the classic form have high blood pressure which develops in the first year of life. As affected people with internal gonads get older, they may develop excessive body hair growth and irregular menstruation. People with external gonads with the non-classic form do not typically have any signs or symptoms except for short stature. High blood pressure is not a feature of the non-classic form.


Merck Manuals describes the diagnosis process as a “measurement of cortisol, its precursors, and adrenal androgens and sometimes by measuring 11-deoxycortisol after adrenocorticotropic hormone administration.”


Fewer than 5,000 people in the US have this disease, but they deserve all of the respect, care, and attention they can get. You can find resources catered to them at the CARES Foundation and the MAGIC Foundation, linked in the information box.


There is still a lot of research lacking in our understanding of this disorder as well as how to help those who experience it. To learn more, visit the links in the episode transcription and do what you can to help organizations working towards solutions through volunteering, donating, and whatever other ways you’ve got.


Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens who experience either one or several of the over 7,000 varying rare disorders and diseases, including myself. We desperately need your resources and help, for the sake of our basic human rights and for access equality, as well as to encourage every listener to investigate whether or not they are rare. Any language originally gendered will be neutralized to the best of my ability.



This was Rare Disease Daily #2, 11-beta-hydroxylase deficiency. I’m yannick-robin. Thank you for your time.


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yannick-robin eike mirko [who communicates in Spanish, English, + ASL] is a Manhattan-based Biawaisa/Yamoká-hu/Maorocoti multidisciplinary artist, choreographer, writer, doula and disability justice activist with a rare disease. His work sits at the intersection of movement, access, queer and indigenous survival, death care, and institutional accountability, using the body as archive, protest, and living evidence.

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Her relationship with dance and movement has never been linear or purely technical. From Off-Broadway to online, their work has been shaped by access, interruption, advocacy, and forced stillness. Movement and progress, for yannick-robin, is not simply choreography or activism; it is testimony, how a marginalized body speaks when institutions fail to listen. 
 

In 2021, yannick-robin participated in Drawing Breath, a visual and embodied project by Risa Puno that centered marginalized voices during COVID, with yannick-robin representing disabled people. The work focused on breath, endurance, and visibility at a time when disabled lives were being openly treated as expendable. This project cemented their understanding of movement as political: presence itself became resistance.
 

In 2022, disability justice became inseparable from his professional life. He was the first physically disabled actor/musician [acoustic and electric guitar, accordion, glockenspiel, xylophone, tambourine] to play a physically disabled role written through an ableist lens and publicly fought the theatre and writers for accountability. This work was documented in his blog and a documentary, a social media movement, and ultimately led to his inclusion in the University of Minnesota’s Tretter Transgender Oral History Project, archiving his contributions to disability, gender, and labor justice in theatre (the most recent edition/collection of years awaiting entering the public access archive due to funding and completion of editing. Help fund the preservation of non-cis history here).
 

That same year, he worked on Mr. Holland’s Opus at Ogunquit Playhouse as an actor/musician [bugle, trumpet, drum kit], a fully captioned production where his lived experience as a non-cis deaf and physically disabled artist directly informed their performance rhythm, physical storytelling, and musicality. Also in 2022, she performed in the inaugural Breaking the Binary Theatre Festival on Theatre Row under the direction of L Morgan Lee, delivering work as an actor involving monologuing about wheelchair use, access failure, and systemic injustice, using their body not as metaphor, but as evidence. 
 

In 2024 after a year and some change prioritizing deathcare work, they returned to theatre at New York Stage and Film (NYSAF), contributing to the work of disabled choreographer Jerron Herman as an actor/dancer. They also released their multi-genre EP passing that year, which catalogs their multi-instrumental writing and use of music for processing as they fall deeper into grief, hearing loss and deafness, and a world of being misunderstood for not being cis.

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In 2025, yannick-robin worked on the developmental process for Jay Alan Zimmerman’s upcoming show Songs for Hands on a Thursday, following Jerron Herman’s recommendation. The project included a residency at New York Theatre Barn’s Choreography Lab and a music workshop premiere, where yannick-robin served as both choreographer and dancer. The piece centered a Deaf father’s death and a CODA grappling with silence; yannick-robin’s role was to integrate sign language into choreography and bridge gaps between sound, access, and movement for d/Deaf performers.
 

Alongside his performance work, yannick-robin has been active in nonprofit and advocacy spaces since 2020. She worked for Imara Jones of TransLash Media, one of TIME Magazine’s 100 Most Influential People of 2023, where they were nominated for a Webby Award as an associate and digital producer for The TransLash Podcast, contributed to The Anti-Trans Hate Machine series, and wrote obituaries for TGNC siblings lost to violence. He has written for TalkDeath on racial disparities and discrimination in death care and other deathcare and injustice related topics and now offers obituary writing, death doulaship, and bereavement counseling for TGNC decedents and their families, people with rare diseases, and disabled communities.


for commissions, death care, speaking engagements and more, press the contact button.
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yannick-robin eike mirko is represented by Arise Artists Agency

© 2026 yannick-robin eike mirko

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