Intersex healthcare

Last updated

Intersex healthcare differs from the healthcare of endosex people due to the stigma towards and health needs of intersex people. [1] Intersex healthcare is impacted by a history of concealing information from patients and medically unnecessary surgeries that continue to be performed. [2] [3] 1.7% of the general population is estimated to be intersex. [4] [5] Healthcare for intersex people can include treatments to improve the mental, cognitive, physical, and sexual health of intersex people. The need for and type of care can vary depending on one's intersex variation.

Contents

History

Intersex conditions have been documented since antiquity, and began to be studied by doctors in the late 1800s. [6] Medical professionals in Great Britain, France, and the U.S. began searching for definitive markers to determine what was thought to be the intersex person's true sex. [6] These determinants were used to inform the patient of their true sex with the expectation that the patient would subsequently change to fit social norms. [6]

In the 1930s, surgeries intended to correct the genitals of intersex people were developed and became a standard treatment. [2] [7] At the time, surgeon Lennox Ross Broster described that corrective surgery would cause patients to "lose their acquired male characters, and revert to their normal feminine ones...[and] return to normal sexuality psychologically." [7] In the 1940s, boundaries were created to separate those who had physical intersex variations, and those who desired sex reassignment without physical variations. [7] This served to provide surgical procedures only to intersex people, while directing transgender people towards psychological services. [7]

In the 1950s, John Money theorized that children were gender neutral until the age of two, and gender could be assigned based on how a child was raised. [2] [7] This further pushed surgeries for intersex people, young children in particular. [2] Clinicians often hid that a child was intersex both from patients and their parents. [2]

That same decade, medical advances emerged to evaluate a fetus' sex and birth defects such as ultrasound, amniocentesis, and the discovery of the HLA system and its role in pregnancy. [8] [9] As technologies advanced, clinicians became able to detect intersex conditions such as congenital adrenal hyperplasia and Turner syndrome before the birth of the child. [10] [11]

During the 1990s, intersex activists challenged the use of corrective genital surgery and the stigma around intersex variations. [12] [13] In 2005, the European Society for Paediatric Endocrinology and the Wilkins Pediatric Endocrine Society held a conference with 50 international experts and two intersex participants decide which term should be used to refer to people with intersex variations. [14] The term disorders of sex development, abbreviated as DSD, was chosen. [14] In a 2006 consensus statement the adoption of the term DSD was purposed. [15] [16]

Medical characterization and nomenclature

The American Academy of Pediatrics defines disorders of sex development as "congenital conditions in which development of chromosomal, gonadal, or anatomical (genital) sex is atypical for that expected for a male or female." [17] Intersex conditions result in a combination of male and female structures, such as having both a womb and testes; atypical genital appearance, such as a closed vagina; or missing or underdeveloped reproductive organs, such as a vaginal opening with no womb. [18] Other intersex conditions may result in genitals expected of one's sex, but differing chromosomes (having only an X chromosome, XXY chromosomes, etc.) [18]

The term "disorders of sex development" is contentious as some organizations and intersex advocates believe that being intersex should not be pathologized. For instance, Planned Parenthood describes being intersex as a "naturally occuring variation" rather than a medical problem. [19] Professor Elizabeth Reis supports changing the term to divergence of sex development rather than disorder, writing that "using divergence, intersex people would not be labeled as being in a physical state absolutely in need of repair." [14]

Some parents of intersex children prefer the term disorders of sex development because the term intersex evokes ideas of sexuality or that their child is a third gender rather than a boy or girl. [14] Some people with intersex variations prefer the term DSD as they may see their variation as a medical condition rather than an identity. [16]

The term intersex has also been criticized by clinicians and parents who believe the term only applies to those with ambiguous genitals or whose chromosomes and anatomy do not align. [16] Disagreement remains over which variations should be considered intersex. [20]

Healthcare needs

Physical health

Bone health is a common concern for intersex patients. For instance, people with complete androgen insensitivity syndrome (CAIS) have low bone density as a result of "decreased circulating estrogen and skeletal resistance to androgen action." [21] People with androgen insensitivity syndrome who have undergone a gonadectomy no longer produce endogenous hormones. [21] This necessitates the use of long term hormone therapy to maintain bone health. [22]

Turner syndrome, gonadal dysgenesis, Klinefelter syndrome and congenital adrenal hyperplasia (CAH) can also result in issues in bone development. [23] [24] In Klienfelter syndrome and gondal dysgenesis, this is caused by insufficient sex hormones. [23] In CAH, it is due to excessive adrenal androgen as well as life long treatment with glucocorticoid, a type of steroid. [23] [25] [26] Bone health is maintained through monitoring bone mineral density with x-rays and providing hormone replacement therapy to prevent osteoporosis. [27] [10] [28] [24]

Hormone replacement serves additional purposes other than bone health. In those with CAH, steroids called mineralocorticoids help regulate salt and water in the body to prevent salt-wasting disease. [29] [30] In some intersex people, oestrogen or testosterone is needed to induce puberty. [31] This is important to help the body mature and develop secondary sex characters, to allow intersex people to develop alongside their peers, and prevent delayed intellectual, social, and emotional development. [31]

Some intersex variations result in an increased risk of cancer. For example, atypical gonads in those with Swyer syndrome are at an increased risk of developing cancer, specifically germ cell tumors, if not removed. [27] [32]

Some intersex variations are associated with metabolic and cardiovascular conditions. In the case of CAH, it is associated with hypertension, a higher body mass index, and insulin resistance. [33] [34] Intersex variations in sex chromosomes are associated with an increased risk of both type one and type two diabetes. [34] Turner syndrome, one such chromosomal intersex variation, is also associated with hypertension. [10]

Intersex conditions can coincide with other congenital anomalies. [34] People with 46 XY DSD are more likely to be born with heart defects. [34] Those with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) type 2 can also be born with defects related to their hearing, vertebrae, upper urinary tract, and kidneys. [35] Doctors will check for congenital anomalies in patients with suspected MRKH by using MRI and/or transabdominal ultrasonography. [35] Those with androgen insensitivity syndrome or hypospadias may also have atypical kidneys or upper urinary tract. [34]

Sexual health

Fertility varies depending on the intersex variations one has. For instance, 40 percent of people with Turner syndrome can become pregnant either with their own eggs or, more commonly, donor eggs while men with 46XX are always infertile. [36] [37] Fertility counseling is desired by intersex people and families; this counseling can be provided by a clinician, though gaps in knowledge about intersex fertility are common. [38] Procedures such as testicular sperm extraction and in vitro fertilization can help some intersex people have children. [36] [37] Intracytoplasmic sperm injection, a type of in vitro fertilization in which sperm is directly injected into an egg, can further assist those with 5-alpha-reductase type 2 deficiency and Klienfelter syndrome to have children. [36] [37] [39]

Dish used for intracytoplasmic sperm injection, a type of in vitro fertilization used in cases of male infertility. Intracytoplasmic sperm injection.png
Dish used for intracytoplasmic sperm injection, a type of in vitro fertilization used in cases of male infertility.

Some intersex people are more likely to experience sexual dissatisfaction or difficulty in sexual functioning. For example, 39.3 of men with Klienfelter syndrome and 37.1 to 44.1 percent of women with XY DSD are unsatisfied to very unsatisfied with their sex life compared to 20.8 percent of the general population. [40] This is not universal across all intersex conditions as those with Turner syndrome and CAH report sex life satisfaction closer to that of the general population. [40]

Some intersex conditions are associated with genital dissatisfaction due to concerns about penile length, vaginal length, size of clitoris, etc. [40] Intersex people who have undergone genital surgery may experience reduced sexual sensation and functioning as a result. [41] Though for intersex conditions like CAH and hypospadias, sex life satisfaction did not vary compared to controls. [42] In the case of CAH, relationship dynamics and how one participates in and responds to sexual situations may matter to sexual functioning more than genital anatomy. [42]

According to a research paper in Obstetrics & Gynecology, intersex patients should be offered psychological support or sex therapy if they express anxiety about sexual function or fear of intimacy. [43] A sexologist can be included in a multidisciplinary team to help address sexual health concerns. [40] Hormone replacement therapy is used to maintain sexual functioning for some intersex conditions such as ovotesticular DSD. [44]

Mental health

Intersex people are at a high risk of developing depression and PTSD. A survey of intersex adults in the U.S. found that respondents 61.1 reported having depressive disorders compared to 19 percent of the general adult population. [45] PTSD was also reported by 40.9% of those surveyed. [45] An increased risk of suicidality has been found; in a European study, 6.8 percent of intersex people age 16 or older reporting attempted suicide compared to 1.8 percent in the control group. [46] Intersex people can face issues that worsen their mental health such as stigma and discrimination, bullying, family rejection, tension with partners about fertility, etc. [47]

It is not uncommon for intersex people born with ambiguous sex characteristics to experience gender dysphoria. A 2021 meta analysis found that 15 percent of intersex people born with ambiguous sex characteristics experience gender dysphoria in adolescence or adulthood. [48] Patients with 5-alpha-reductase deficiency and 17-hydroxysteroid dehydrogenase deficiency have the highest prevalence of gender dysphoria, while those with CAH have the lowest prevalence. [48]

Those with intersex variations should have a psychiatrist or psychologist working with a multidisciplinary team. [15] Mental health professionals can aid intersex people when making choices about hormone treatments, gender assignment, gender reassignment, and surgeries. [15] Psychological support for parents and family members helps reduce harm to an intersex child. This support helps by educating family against misconceptions about intersex variations, as well as encouraging parents to share age-appropriate information with their child. [49] This aids in preventing secrecy about the child's intersex status. [49]

Findings suggest peer support for intersex people and their parents can positively contribute to their well being, though robust evidence is lacking. [47] [50] Trained facilitators are able to help participants process health information. [50] The added social support mitigates isolation as well. [50] Accessing peer support can prove difficult due to lack of referrals. [50]

Cognitive health

Intersex variations can impact cognitive and social functioning. Rates of autism symptoms are higher in intersex people. A survey of European intersex adults finding a 9.1 percent prevalence, compared to 1 percent in the general adult population. [51] This percentage differs depending on the particular intersex variation, with those with Klinefelter syndrome having the highest autism symptom prevalence of the variations measured. [51]

Cognitive differences depend on the particular variation. Females with Turner syndrome are more likely to be diagnosed with attention deficit disorder, can struggle with social competence in both childhood and adulthood, and can have visuospatial deficits that negatively impact math ability. [52] [53] Those with Klinefelter syndrome are likely to experience language issues. 70-80 percent of males with KS experience language difficulties at an early age, and impairments in verbal fluency and confrontation naming have been found in adolescents and adults. [54] Reading difficulties are similarly common in children and adults with Klinefelter Syndrome. [54]

A psychologist should be consulted to assess learning difficulties if they are present. [55] [10] Academic accommodations, tutoring, or other forms of support may be equipped to help those with cognitive impairments. [53] [55] Psychiatric interventions and other supports may be needed throughout one's life to help with difficulties in executive and cognitive functioning. [47]

Advocacy

Protesters calling for an end to intersex surgery at a pride demonstration. Pride demonstration Berlin 2020-06-27 58.jpg
Protesters calling for an end to intersex surgery at a pride demonstration.

Intersex and human rights organizations advocate against medically unnecessary genital surgeries on young children. [56] [57] Advocates promote patient-centered care rather than procedures to ease parents. [58] Clinician advocates have worked with professional organizations to write position statements in support of deferring non-essential genital surgery until a child is older. [2] Intersex organizations and clinician advocates both promote mental health support of intersex people as a key part of intersex healthcare. [58] [2]

Barriers to care

Medical trauma

Many intersex patients have gone through negative medical experiences including childhood genital surgery, having their medical history hidden from them, pathologization of intersex variations, and genital examinations and photography. [59] [60] [61] Some treatments and behaviors have been described as medicalized rape. [62] According to the NNID Foundation, an intersex organization in the Netherlands,

"These actions [of medicalized rape and sexual violence] include: grooming behaviour, provoking sexual arousal without consent sometimes even on small children, construction of vagina's on children and teens that require insertion of penis-shaped objects [vaginal dilation], repeated observing and examining genitals far beyond any level needed to provide care, but rather out of personal interest, and producing photographs and video's of intersex genitals without consent and spreading these images without restrictions." [62]

These experiences negatively impact the well-being of intersex people. Vaginal dilation and surgeries early in life cause physical and psychological trauma. [60] Nonconsensual surgeries can contribute to healthcare avoidance and medical distrust among intersex people, causing them to delay receiving preventative or emergency care. [63]

Inaccessibility

Intersex patients have better outcomes when receiving specialized care, such centers that provide care for intersex people. [64] Intersex adults can experience difficulty finding specialized care for their variations; this is in part due to a lack of adult specialists with significant training about intersex conditions. [34] A small study in the Journal of General Internal Medicine found that 28 percent had difficultly accessing specialist care. [65]

Intersex patients and their families frequently experience a lack of psychological support. Families with intersex children may feel that being recommended a psychologist implies they are not performing their role in the family well. [66] Intersex patients and caretakers may also have negative perceptions about therapy, finding it taboo or unpleasant. [66] Intersex people desiring psychological support may not be offered such services. A study of 110 intersex people found that majority of patients had not been offered psychological counseling, and 27 percent reported not being offered counseling while having an unmet need for it. [65]

Intersex patients experience issues accessing sexual health and an affirming doctor as well. A survey from the U.K.'s Government Equalities Office found that 11 percent of intersex participants reported that it was difficult to access sexual healthcare compared to 5 percent of endosex LGBT participants. [67] In addition, 6 percent of intersex people reported that their general practitioner was unsupportive compared to 2 percent of endosex LGBT people. [67]

It is difficult for intersex people to find providers able to meet their needs in old age. [68] Elderly intersex people face issues finding caretakers. They may fear living in retirement communities due to potential intolerance from other residents. [69] Elderly intersex people can feel concerned about home care as well; they may fear abuse because of their intersex variation or surgical changes to their body. [69]

See also

Related Research Articles

<span class="mw-page-title-main">5α-Reductase 2 deficiency</span> Medical condition

5α-Reductase 2 deficiency (5αR2D) is an autosomal recessive condition caused by a mutation in SRD5A2, a gene encoding the enzyme 5α-reductase type 2 (5αR2). The condition is rare, affects only genetic males, and has a broad spectrum.

<span class="mw-page-title-main">Hypospadias</span> Penis malformation in which the urethral opening is misplaced

Hypospadias is a common malformation in fetal development of the penis in which the urethra does not open from its usual location on the head of the penis. It is the second-most common birth defect of the male reproductive system, affecting about one of every 250 males at birth, although when including milder cases, is found in up to 4% of newborn males. Roughly 90% of cases are the less serious distal hypospadias, in which the urethral opening is on or near the head of the penis (glans). The remainder have proximal hypospadias, in which the meatus is all the way back on the shaft of the penis, near or within the scrotum. Shiny tissue or anything that typically forms the urethra instead extends from the meatus to the tip of the glans; this tissue is called the urethral plate.

<span class="mw-page-title-main">Congenital adrenal hyperplasia</span> Genetic disorders of the adrenal gland

Congenital adrenal hyperplasia (CAH) is a group of autosomal recessive disorders characterized by impaired cortisol synthesis. It results from the deficiency of one of the five enzymes required for the synthesis of cortisol in the adrenal cortex. Most of these disorders involve excessive or deficient production of hormones such as glucocorticoids, mineralocorticoids, or sex steroids, and can alter development of primary or secondary sex characteristics in some affected infants, children, or adults. It is one of the most common autosomal recessive disorders in humans.

<span class="mw-page-title-main">Congenital adrenal hyperplasia due to 21-hydroxylase deficiency</span> Medical condition

Congenital adrenal hyperplasia due to 21-hydroxylase deficiency (CAH) is a genetic disorder characterized by impaired production of cortisol in the adrenal glands.

<span class="mw-page-title-main">Intersex medical interventions</span> Performed to modify atypical or ambiguous genitalia

Intersex medical interventions (IMI), sometimes known as intersex genital mutilations (IGM), are surgical, hormonal and other medical interventions performed to modify atypical or ambiguous genitalia and other sex characteristics, primarily for the purposes of making a person's appearance more typical and to reduce the likelihood of future problems. The history of intersex surgery has been characterized by controversy due to reports that surgery can compromise sexual function and sensation, and create lifelong health issues. The medical interventions can be for a variety of reasons, due to the enormous variety of the disorders of sex development. Some disorders, such as salt-wasting disorder, can be life-threatening if left untreated.

<span class="mw-page-title-main">History of intersex surgery</span>

The history of intersex surgery is intertwined with the development of the specialities of pediatric surgery, pediatric urology, and pediatric endocrinology, with our increasingly refined understanding of sexual differentiation, with the development of political advocacy groups united by a human qualified analysis, and in the last decade by doubts as to efficacy, and controversy over when and even whether some procedures should be performed.

<span class="mw-page-title-main">Persistent Müllerian duct syndrome</span> Medical condition

Persistent Müllerian duct syndrome (PMDS) is the presence of Müllerian duct derivatives in what would be considered a genetically and otherwise physically normal male animal by typical human based standards. In humans, PMDS typically is due to an autosomal recessive congenital disorder and is considered by some to be a form of pseudohermaphroditism due to the presence of Müllerian derivatives. PMDS can also present in non-human animals.

<span class="mw-page-title-main">Hyperandrogenism</span> Excess androgens (male-related hormones) in the body

Hyperandrogenism is a medical condition characterized by high levels of androgens. It is more common in women than men. Symptoms of hyperandrogenism may include acne, seborrhea, hair loss on the scalp, increased body or facial hair, and infrequent or absent menstruation. Complications may include high blood cholesterol and diabetes. It occurs in approximately 5% of women of reproductive age.

Ovotesticular syndrome is a rare congenital condition where an individual is born with both ovarian and testicular tissue. It is one of the rarest DSDs, with only 500 reported cases. Commonly, one or both gonads is an ovotestis containing both types of tissue. Although it is similar in some ways to mixed gonadal dysgenesis, the conditions can be distinguished histologically.

Gonadal dysgenesis is classified as any congenital developmental disorder of the reproductive system characterized by a progressive loss of primordial germ cells on the developing gonads of an embryo. One type of gonadal dysgenesis is the development of functionless, fibrous tissue, termed streak gonads, instead of reproductive tissue. Streak gonads are a form of aplasia, resulting in hormonal failure that manifests as sexual infantism and infertility, with no initiation of puberty and secondary sex characteristics.

<span class="mw-page-title-main">Partial androgen insensitivity syndrome</span> Medical condition

Partial androgen insensitivity syndrome (PAIS) is a condition that results in the partial inability of the cell to respond to androgens. It is an X linked recessive condition. The partial unresponsiveness of the cell to the presence of androgenic hormones impairs the masculinization of male genitalia in the developing fetus, as well as the development of male secondary sexual characteristics at puberty, but does not significantly impair female genital or sexual development. As such, the insensitivity to androgens is clinically significant only when it occurs in individuals with a Y chromosome. Clinical features include ambiguous genitalia at birth and primary amenhorrhoea with clitoromegaly with inguinal masses. Müllerian structures are not present in the individual.

Pseudohermaphroditism is an outdated term for when an individual's gonads were mismatched with their internal reproductive system and/or external genitalia. The term was contrasted with "true hermaphroditism", a condition describing an individual with both female and male reproductive gonadal tissues. Associated conditions includes Persistent Müllerian duct syndrome and forms of androgen insensitivity syndrome.

<span class="mw-page-title-main">Disorders of sex development</span> Medical conditions involving the development of the reproductive system

Disorders of sex development (DSDs), also known as differences in sex development or variations in sex characteristics (VSC), are congenital conditions affecting the reproductive system, in which development of chromosomal, gonadal, or anatomical sex is atypical.

<span class="mw-page-title-main">Intersex</span> Atypical congenital variations of sex characteristics

Intersex people are individuals born with any of several sex characteristics, including chromosome patterns, gonads, or genitals that, according to the Office of the United Nations High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies".

Genitoplasty is plastic surgery to the genitals. Genitoplasties may be reconstructive to repair injuries, and damage arising from cancer treatment, or congenital disorders, endocrine conditions, or they may be cosmetic.

<span class="mw-page-title-main">Discrimination against intersex people</span>

Intersex people are born with sex characteristics, such as chromosomes, gonads, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies". "Because their bodies are seen as different, intersex children and adults are often stigmatized and subjected to multiple human rights violations".

<span class="mw-page-title-main">Eric Vilain</span> French-American physician-scientist

Eric Vilain is a physician-scientist and professor in the fields of Differences of Sex Development (DSDs) and precision medicine. He is the Associate Vice Chancellor for Scientific Affairs at the University of California, Irvine Health Affairs and also the director of the UCI Institute for Clinical and Translational Science. He previously was the director of the Center for Genetic Medicine Research at Children's National Medical Center and the chair of the Department of Genomics and Precision Medicine at the George Washington University School of Medicine & Health Sciences in Washington, D.C. Vilain is a fellow of the American College of Medical Genetics, serves on the International Olympic Committee's Medical Commission, and sits on the Board of Scientific Counselors for the National Institute of Child Health and Human Development (NICHD).

Late onset congenital adrenal hyperplasia (LOCAH), also known as nonclassic congenital adrenal hyperplasia, is a milder form of congenital adrenal hyperplasia (CAH), a group of autosomal recessive disorders characterized by impaired cortisol synthesis that leads to variable degrees of postnatal androgen excess.

Sexual anomalies, also known as sexual abnormalities, are a set of clinical conditions due to chromosomal, gonadal and/or genitalia variation. Individuals with congenital (inborn) discrepancy between sex chromosome, gonadal, and their internal and external genitalia are categorised as individuals with a disorder of sex development (DSD). Afterwards, if the family or individual wishes, they can partake in different management and treatment options for their conditions.

<span class="mw-page-title-main">Definitions of intersex</span>

Various criteria have been offered for the definition of intersex, including ambiguous genitalia, atypical genitalia, and differential sexual development. Ambiguous genitalia occurs in roughly 0.05% of all births, usually caused by masculinization or feminization during pregnancy, these conditions range from full androgen insensitivity syndrome to ovotesticular syndrome.

References

  1. ↑ "Intersex Health - NYC Health". www.nyc.gov. Archived from the original on 2024-08-03. Retrieved 2024-08-03.
  2. 1 2 3 4 5 6 7 Indig, Gnendy; Serrano, Mariana; Dalke, Katharine B.; Ejiogu, Nwadiogo I.; Grimstad, Frances (September 2021). "Clinician Advocacy and Intersex Health: A History of Intersex Health Care and the Role of the Clinician Advocate Past, Present, and Future". Pediatric Annals. 50 (9): e359–e365. doi:10.3928/19382359-20210816-01. PMID   34542337.
  3. ↑ Behrens, Kevin G. (December 2020). "A principled ethical approach to intersex paediatric surgeries". BMC Medical Ethics. 21 (1): 108. doi: 10.1186/s12910-020-00550-x . PMC   7597036 . PMID   33121480.
  4. ↑ Esteban, Caleb; Ortiz-Rodz, Derek Israel; Muñiz-Pérez, Yesibelle I.; Ramírez-Vega, Luis; Jiménez-Ricaurte, Coral; Mattei-Torres, Edna; Finkel-Aguilar, Victoria (7 February 2023). "Quality of Life and Psychosocial Well-Being among Intersex-Identifying Individuals in Puerto Rico: An Exploratory Study". International Journal of Environmental Research and Public Health. 20 (4): 2899. doi: 10.3390/ijerph20042899 . PMC   9957316 . PMID   36833596.
  5. ↑ "Intersex People". United Nations Human Rights Office of the High Commissioner. Archived from the original on 2023-07-08. Retrieved 2024-08-15.
  6. 1 2 3 Kennedy, Aileen (2016). "Fixed at Birth: Medical and Legal Erasures of Intersex Variations". University of New South Wales Law Journal. 39 (2): 813–842. hdl:1959.11/20188.
  7. 1 2 3 4 5 Griffiths, David Andrew (March 2018). "Diagnosing sex: Intersex surgery and 'sex change' in Britain 1930–1955". Sexualities. 21 (3): 476–495. doi:10.1177/1363460717740339. PMC   5836525 . PMID   29568226.
  8. ↑ Bodmer, Walter (2023). "A historical perspective on HLA". Immunotherapy Advances. 3 (1): ltad014. doi:10.1093/immadv/ltad014. PMC   10449411 . PMID   37636243.
  9. ↑ Carlson, Laura M.; Vora, Neeta L. (June 2017). "Prenatal Diagnosis". Obstetrics and Gynecology Clinics of North America. 44 (2): 245–256. doi:10.1016/j.ogc.2017.02.004. PMC   5548328 . PMID   28499534.
  10. 1 2 3 4 "Turner syndrome - Treatment". nhs.uk. 2017-10-20. Retrieved 2024-07-31.
  11. ↑ Forest, Maguelone G.; David, Michel; Morel, Yves (April 1993). "Prenatal diagnosis and treatment of 21-hydroxylase deficiency". The Journal of Steroid Biochemistry and Molecular Biology. 45 (1–3): 75–82. doi:10.1016/0960-0760(93)90125-G. PMID   8481354.
  12. ↑ Hegarty, Peter; Vaughan, Sam (March 2024). "Intersex in the USA's Best-Selling Undergraduate Psychology Textbooks: Uneven Critique in an Ongoing Scientific and Ethical Crisis". Sex Roles. 90 (3): 475–489. doi:10.1007/s11199-024-01456-3.
  13. ↑ Greenberg, Julie (May 2003). "Legal Aspects of Gender Assignment". The Endocrinologist. 13 (3): 277–286. doi:10.1097/01.ten.0000081686.21823.9d.
  14. 1 2 3 4 Reis, Elizabeth (September 2007). "Divergence or Disorder?: the politics of naming intersex". Perspectives in Biology and Medicine. 50 (4): 535–543. doi:10.1353/pbm.2007.0054. PMID   17951887.
  15. 1 2 3 Hughes, I A (14 June 2005). "Consensus statement on management of intersex disorders". Archives of Disease in Childhood. 91 (7): 554–563. doi:10.1136/adc.2006.098319. PMC   2082839 . PMID   16624884.
  16. 1 2 3 Feder, E. K.; Karkazis, K. (2008). "What's in a Name?: The Controversy over 'Disorders of Sex Development'". Hastings Center Report. 38 (5): 33–36. doi:10.1353/hcr.0.0062. PMID   18947138.
  17. ↑ Weimer, Amy (23 March 2022). "Disorders of Sex Development". Pediatric Care Online. doi:10.1542/aap.ppcqr.396188.
  18. 1 2 "Differences in sex development". NHS. 18 October 2017. Archived from the original on 1 August 2024. Retrieved 2 August 2024.
  19. ↑ "What's intersex?". Planned Parenthood. Archived from the original on 2024-07-18. Retrieved 2024-08-02.
  20. ↑ Bates, Nancy; Chin, Marshall; Becker, Tara, eds. (2022). "Measuring Intersex/DSD Populations". Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press (US). doi:10.17226/26424. ISBN   978-0-309-27510-1. PMID   35286054.
  21. 1 2 Weidler, Erica M.; Linnaus, Maria E.; Baratz, Arlene B.; Goncalves, Luis F.; Bailey, Smita; Hernandez, S. Janett; Gomez-Lobo, Veronica; van Leeuwen, Kathleen (December 2019). "A Management Protocol for Gonad Preservation in Patients with Androgen Insensitivity Syndrome". Journal of Pediatric and Adolescent Gynecology. 32 (6): 605–611. doi:10.1016/j.jpag.2019.06.005. PMC   6917890 . PMID   31233832.
  22. ↑ Döhnert, Ulla; Wünsch, Lutz; Hiort, Olaf (2017). "Gonadectomy in Complete Androgen Insensitivity Syndrome: Why and When?". Sexual Development. 11 (4): 171–174. doi:10.1159/000478082. PMID   28719904.
  23. 1 2 3 Bertelloni, S.; Baroncelli, G.I.; Mora, S. (2010). "Bone Health in Disorders of Sex Differentiation". Sexual Development. 4 (4–5): 270–284. doi:10.1159/000315961. PMID   20820111.
  24. 1 2 Grande, Giuseppe; Graziani, Andrea; Di Mambro, Antonella; Selice, Riccardo; Ferlin, Alberto (5 July 2023). "Osteoporosis and bone metabolism in patients with Klinefelter syndrome". Endocrine Connections. 12 (8). doi:10.1530/EC-23-0058. PMC   10388662 . PMID   37166398.
  25. ↑ Rangaswamaiah, Swetha; Gangathimmaiah, Vinay; Nordenstrom, Anna; Falhammar, Henrik (31 July 2020). "Bone Mineral Density in Adults With Congenital Adrenal Hyperplasia: A Systematic Review and Meta-Analysis". Frontiers in Endocrinology. 11: 493. doi: 10.3389/fendo.2020.00493 . PMC   7438951 . PMID   32903805.
  26. ↑ "Glucocorticoid". National Cancer Institute. 2011-02-02. Retrieved 2024-08-05.
  27. 1 2 "Swyer syndrome". MedlinePlus Genetics. Archived from the original on 2021-12-19. Retrieved 2024-08-05.
  28. ↑ "About Turner Syndrome". National Human Genome Research Institute.
  29. ↑ Litwack, Gerald (2022). "Adrenal corticoids". Hormones. Elsevier. pp. 249–268. doi:10.1016/B978-0-323-90262-5.00009-3. ISBN   978-0-323-90262-5.
  30. ↑ "Congenital Adrenal Hyperplasia". Endocrine Society. 24 January 2022. Archived from the original on 6 August 2024. Retrieved 6 August 2024.
  31. 1 2 Nordenström, A; Ahmed, S F; van den Akker, E; Blair, J; Bonomi, M; Brachet, C; Broersen, L H A; Claahsen-van der Grinten, H L; Dessens, A B; Gawlik, A; Gravholt, C H; Juul, A; Krausz, C; Raivio, T; Smyth, A; Touraine, P; Vitali, D; Dekkers, O M (June 2022). "Pubertal induction and transition to adult sex hormone replacement in patients with congenital pituitary or gonadal reproductive hormone deficiency: an Endo-ERN clinical practice guideline". European Journal of Endocrinology. 186 (6): G9–G49. doi:10.1530/eje-22-0073. PMC   9066594 . PMID   35353710.
  32. ↑ "Swyer Syndrome". National Cancer Institute. 2011-02-02. Archived from the original on 2024-08-20. Retrieved 2024-08-05.
  33. ↑ Babu, Ramesh; Shah, Utsav (February 2021). "Gender identity disorder (GID) in adolescents and adults with differences of sex development (DSD): A systematic review and meta-analysis". Journal of Pediatric Urology. 17 (1): 39–47. doi:10.1016/j.jpurol.2020.11.017. ISSN   1477-5131. PMID   33246831.
  34. 1 2 3 4 5 6 Cools, Martine; Nordenström, Anna; Robeva, Ralitsa; Hall, Joanne; Westerveld, Puck; Flück, Christa; Köhler, Birgit; Berra, Marta; Springer, Alexander; Schweizer, Katinka; Pasterski, Vickie (July 2018). "Caring for individuals with a difference of sex development (DSD): a Consensus Statement". Nature Reviews Endocrinology. 14 (7): 415–429. doi:10.1038/s41574-018-0010-8. ISSN   1759-5037. PMC   7136158 . PMID   29769693.
  35. 1 2 Morcel, Karine; Camborieux, Laure; Guerrier, Daniel (2007-03-14). "Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome". Orphanet Journal of Rare Diseases. 2 (1): 13. doi: 10.1186/1750-1172-2-13 . ISSN   1750-1172. PMC   1832178 . PMID   17359527.
  36. 1 2 3 Van Batavia, J.P.; Kolon, T.F. (December 2016). "Fertility in disorders of sex development: A review". Journal of Pediatric Urology. 12 (6): 418–425. doi:10.1016/j.jpurol.2016.09.015. PMID   27856173.
  37. 1 2 3 Foyouzi, Nastaran (11 March 2019). "Fertility in Disorders of Sex Development: Evidence and Uncertainties". Reproductive Medicine, Gynecology & Obstetrics. 4 (1): 1–14. doi: 10.24966/RMGO-2574/100015 .
  38. ↑ Finlayson, Courtney; Johnson, Emilie K.; Chen, Diane; Fechner, Patricia Y.; Hirsch, Josephine; Rosoklija, Ilina; Schafer-Kalkhoff, Tara; Shnorhavorian, Margarett; Gomez-Lobo, Veronica (October 2022). "Fertility in Individuals with Differences in Sex Development: Provider Knowledge Assessment". Journal of Pediatric and Adolescent Gynecology. 35 (5): 558–561. doi:10.1016/j.jpag.2022.02.004. PMC   9468186 . PMID   35296452.
  39. ↑ "ICSI Key Findings | Assisted Reproductive Technology (ART) | CDC". www.cdc.gov. 2019-01-31. Retrieved 2024-08-23.
  40. 1 2 3 4 Kreukels, Baudewijntje P. C.; Cohen-Kettenis, Peggy T.; Roehle, Robert; van de Grift, Tim C.; Slowikowska-Hilczer, Jolanta; Claahsen-van der Grinten, Hedi; Lindén Hirschberg, Angelica; de Vries, Annelou L. C.; Reisch, Nicole; Bouvattier, Claire; Nordenström, Anna; Thyen, Ute; Köhler, Birgit (17 November 2019). "Sexuality in Adults with Differences/Disorders of Sex Development (DSD): Findings from the dsd-LIFE Study". Journal of Sex & Marital Therapy. 45 (8): 688–705. doi:10.1080/0092623X.2019.1610123. PMID   31034334.
  41. ↑ Creighton, Sarah; Chernausek, Steven D.; Romao, Rodrigo; Ransley, Philip; Salle, Joao Pippi (December 2012). "Timing and nature of reconstructive surgery for disorders of sex development – Introduction". Journal of Pediatric Urology. 8 (6): 602–610. doi:10.1016/j.jpurol.2012.10.001. PMID   23146296.
  42. 1 2 Lee, Peter A.; Nordenström, Anna; Houk, Christopher P.; Ahmed, S. Faisal; Auchus, Richard; Baratz, Arlene; Baratz Dalke, Katharine; Liao, Lih-Mei; Lin-Su, Karen; Looijenga 3rd, Leendert H.J.; Mazur, Tom; Meyer-Bahlburg, Heino F.L.; Mouriquand, Pierre; Quigley, Charmian A.; Sandberg, David E.; Vilain, Eric; Witchel, Selma (2016). "Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care". Hormone Research in Paediatrics. 85 (3): 158–180. doi:10.1159/000442975. PMID   26820577.{{cite journal}}: CS1 maint: numeric names: authors list (link)
  43. ↑ Amies Oelschlager, Anne-Marie; Muscarella, Miriam; Gomez-Lobo, Veronica (October 2015). "Transition to Adult Care in Persons With Disorders of Sexual Development: The Role of the Gynecologist". Obstetrics & Gynecology. 126 (4): 845–849. doi:10.1097/AOG.0000000000001034. PMC   4580509 . PMID   26348185.
  44. ↑ Kilberg, Marissa J.; McLoughlin, Michelle; Pyle, Louisa C.; Vogiatzi, Maria G. (December 2019). "Endocrine Management of Ovotesticular DSD, an Index Case and Review of the Literature". Pediatric Endocrinology Reviews: PER. 17 (2): 110–116. doi:10.17458/per.vol17.2019.kmv.endocrineovotesticulardsd. PMC   9172251 . PMID   31763803.
  45. 1 2 Rosenwohl-Mack, Amy; Tamar-Mattis, Suegee; Baratz, Arlene B.; Dalke, Katharine B.; Ittelson, Alesdair; Zieselman, Kimberly; Flatt, Jason D. (9 October 2020). "A national study on the physical and mental health of intersex adults in the U.S." PLOS ONE. 15 (10): e0240088. Bibcode:2020PLoSO..1540088R. doi: 10.1371/journal.pone.0240088 . PMC   7546494 . PMID   33035248.
  46. ↑ Falhammar, Henrik; Claahsen-van der Grinten, Hedi; Reisch, Nicole; Slowikowska-Hilczer, Jolanta; Nordenström, Anna; Roehle, Robert; Bouvattier, Claire; Kreukels, Baudewijntje P C; Köhler, Birgit (March 2018). "Health status in 1040 adults with disorders of sex development (DSD): a European multicenter study". Endocrine Connections. 7 (3): 466–478. doi:10.1530/EC-18-0031. PMC   5861372 . PMID   29490934.
  47. 1 2 3 "Health and wellbeing of people with intersex variations". Health.vic. State of Victoria, Department of Health and Human Services. March 2019. Archived from the original on 2024-08-20. Retrieved 2024-08-01.
  48. 1 2 Babu, Ramesh; Shah, Utsav (2021-02-01). "Gender identity disorder (GID) in adolescents and adults with differences of sex development (DSD): A systematic review and meta-analysis". Journal of Pediatric Urology. 17 (1): 39–47. doi:10.1016/j.jpurol.2020.11.017. ISSN   1477-5131.
  49. 1 2 Ernst, Michelle M.; Liao, Lih-Mei; Baratz, Arlene B.; Sandberg, David E. (August 2018). "Disorders of Sex Development/Intersex: Gaps in Psychosocial Care for Children". Pediatrics. 142 (2). doi:10.1542/peds.2017-4045. PMC   6317541 . PMID   30045929.
  50. 1 2 3 4 Baratz, Arlene B.; Sharp, Melissa K.; Sandberg, David E. (2014). "Disorders of Sex Development Peer Support". Understanding Differences and Disorders of Sex Development (DSD). Endocrine Development. Vol. 27. pp. 99–112. doi:10.1159/000363634. ISBN   978-3-318-02558-3. PMID   25247648.
  51. 1 2 de Vries, Annelou L.C.; Roehle, Robert; Marshall, Louise; Frisén, Louise; van de Grift, Tim C.; Kreukels, Baudewijntje P.C.; Bouvattier, Claire; Köhler, Birgit; Thyen, Ute; Nordenström, Anna; Rapp, Marion; Cohen-Kettenis, Peggy T. (September 2019). "Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries". Psychosomatic Medicine. 81 (7): 629–640. doi:10.1097/PSY.0000000000000718. PMC   6727927 . PMID   31232913.
  52. ↑ Hong, D. S.; Reiss, A. L. (May 2012). "Cognition and behavior in Turner syndrome: a brief review". Pediatric Endocrinology Reviews. 9 Suppl 2 (2): 710–712. PMC   4285374 . PMID   22946281.
  53. 1 2 Reimann, Gabrielle E.; Comis, Leora E.; Bernad Perman, Martha M. (April 2020). "Cognitive Functioning in Turner Syndrome: Addressing Deficits Through Academic Accommodation". Women's Health Reports. 1 (1): 143–149. doi:10.1089/whr.2019.0019. PMC   7325492 . PMID   32617534.
  54. 1 2 Boada, Richard; Janusz, Jennifer; Hutaff-Lee, Christa; Tartaglia, Nicole (January 2009). "The cognitive phenotype in Klinefelter syndrome: A review of the literature including genetic and hormonal factors". Developmental Disabilities Research Reviews. 15 (4): 284–294. doi:10.1002/ddrr.83. PMC   3056507 . PMID   20014369.
  55. 1 2 Davis, Shanlee; Howell, Susan; Wilson, Rebecca; Tanda, Tanea; Ross, Judy; Zeitler, Philip; Tartaglia, Nicole (August 2016). "Advances in the Interdisciplinary Care of Children with Klinefelter Syndrome". Advances in Pediatrics. 63 (1): 15–46. doi:10.1016/j.yapd.2016.04.020. PMC   5340500 . PMID   27426894.
  56. ↑ "Unnecessary Surgery on Intersex Children Must Stop". PHR. 2017-10-20. Archived from the original on 2024-08-20. Retrieved 2024-08-08.
  57. ↑ "US: Harmful Surgery on Intersex Children | Human Rights Watch". 2017-07-25. Archived from the original on 2019-04-26. Retrieved 2024-08-08.
  58. 1 2 "What is the agenda of the intersex patient advocacy movement? | Intersex Society of North America". isna.org. Retrieved 2024-08-08.
  59. ↑ Haghighat, Darius; Berro, Tala; Torrey Sosa, Lillian; Horowitz, Kayla; Brown-King, Bria; Zayhowski, Kimberly (July 2023). "Intersex people's perspectives on affirming healthcare practices: A qualitative study". Social Science & Medicine. 329: 116047. doi:10.1016/j.socscimed.2023.116047. PMID   37390680.
  60. 1 2 Berry, Adeline W.; Monro, Surya (31 December 2022). "Ageing in obscurity: a critical literature review regarding older intersex people". Sexual and Reproductive Health Matters. 30 (1). doi:10.1080/26410397.2022.2136027. PMC   9704076 . PMID   36369786.
  61. ↑ "Background Note on Human Rights Violations against Intersex People". United Nations Human Rights Office of the High Commissioner. October 24, 2019. Archived from the original on August 8, 2024. Retrieved August 8, 2024.
  62. 1 2 "Intersex and medicalized rape" (PDF). United Nations Human Rights Office of the High Commissioner. December 30, 2020. Archived (PDF) from the original on June 15, 2024. Retrieved August 9, 2024.
  63. ↑ Wang, Jeremy C; Dalke, Katharine B; Nachnani, Rahul; Baratz, Arlene B; Flatt, Jason D (16 November 2023). "Medical Mistrust Mediates the Relationship Between Nonconsensual Intersex Surgery and Healthcare Avoidance Among Intersex Adults". Annals of Behavioral Medicine. 57 (12): 1024–1031. doi:10.1093/abm/kaad047. PMID   37616560.
  64. ↑ Cools, Martine; Cheng, Earl Y.; Hall, Joanne; Alderson, Julie; Amies Oelschlager, Anne-Marie; Balen, Adam H.; Chan, Yee-Ming; Geffner, Mitchell E.; Gravholt, Claus H.; Güran, Tülay; Hoebeke, Piet; Lee, Peter; Magritte, Ellie; Matos, Dina; McElreavey, Ken (2024-02-12). "Multi-Stakeholder Opinion Statement on the Care of Individuals Born with Differences of Sex Development: Common Ground and Opportunities for Improvement". Hormone Research in Paediatrics: 1–17. doi:10.1159/000536296. ISSN   1663-2818. PMID   38310850.
  65. 1 2 Thyen, Ute; Lux, Anke; Jürgensen, Martina; Hiort, Olaf; Köhler, Birgit (August 2014). "Utilization of Health Care Services and Satisfaction with Care in Adults Affected by Disorders of Sex Development (DSD)". Journal of General Internal Medicine. 29 (Suppl 3): 752–759. doi:10.1007/s11606-014-2917-7. ISSN   0884-8734. PMC   4124114 . PMID   25029980.
  66. 1 2 Magritte, Ellie; Williams, Jo; Amyot, Emma; Usipuik, Megan; Sanders, Caroline (2023). "Listening to Individuals with Differences in Sex Development or Intersex and Their Families: 'Not Doing Surgery Does Not Mean Doing Nothing'". Hormone Research in Paediatrics. 96 (2): 228–237. doi:10.1159/000525452. PMID   35691284.
  67. 1 2 "National LGBT Survey: Summary report". GOV.UK. Archived from the original on 2018-07-03. Retrieved 2024-08-11.
  68. ↑ Sanders, Caroline; Amyot, Emma; Usipuik, Megan; Crawford, Leigh; Callens, Nina; Chanoine, Jean-Pierre; Jones, Tiffany (April 2022). "Lifespan healthcare transitions among individuals with intersex traits in Canada: a mixed-methods and qualitative study". BMJ Open. 12 (4): e055759. doi:10.1136/bmjopen-2021-055759. PMC   8996003 . PMID   35396291.
  69. 1 2 Berry, Adeline W.; Monro, Surya (31 December 2022). "Ageing in obscurity: a critical literature review regarding older intersex people". Sexual and Reproductive Health Matters. 30 (1). doi:10.1080/26410397.2022.2136027. PMC   9704076 . PMID   36369786.
This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.