Notes from Katie Baratz Dalke's Lecture

These may or may not be easy to follow, but this is what I took from it.

“In the spirit of disclosure”

(Not So) Karyotypical

How can we use the story of intersex to improve care of patients and parents?

Intersection of science, medicine, and lived experience?

Why do we use the language we use?

Why is it important for medicine to know why and if there are differences between male and female?

-          Afraid that if you told intersex people that they were intersex, they’d turn suicidal and/or lesbians – pretty much the same thing back then

 -          Your baby will not grow in your uterus, but in your heart. Literally thought that for a while—kinda scary

 Were your regular checkups different in any way when you were growing up, or just more frequent? à make sure nothing was going wrong

DSD – Disorder of Sex Development

 Kinds of sex:

-          Chromosomal

-          Gonadal

-          Internal reproductive – seminal structures, uterus

-          Genital

-          Secondary

 Egg + sperm = sex karyotype

2 are sex chromosomes

These determine the gonads

Male à SRY gene: yo! Get me some testes! Makin’ hormones

 Pubertyyyyyy

 8 weeks of development is when hormones start to change

 Complete Androgen Insensitivity Syndrome

Androgen receptor non-functional

Hormones are like keys for unlocking doors

Female external female genitalia

Feminizing puberty à no menstruation, pregnancy, no body hair, acne.

 Other DSDs

-          XXY

-          XO

o   Turner’s

-          XY/XX

o   Mosaicism

-          Gonads

o   Dysgenesis

o   Ovoteses

-          Sex hormones

o   AIS

o   5-alpha reductase deficiency, congenital adrenal hyperplasia

§ CAH  -  have to fix right away: emergency

-          Genitals

o   Hypospadias

§ Urethra on under side of penis

o   Micropenis/clitoromegaly

§ Phallometer

§ Small penis

§ Large clit

o   Vaginal agenesis (MRKH)

§ Vagina is different

-          Clinic

o   Sex assignment

§ Social

§ Postpone surgery unless there’s an emergency/risk of infection

o   Disclosure: timing and language

§ Just be age appropriate! Not that stressful

o   Gonadal surgery

§ Go through puberty first

o   Sex and relationships

§ Angst!

§ “Blind pouch”

§ Upper third of the vagina isn’t quite developed

·         Dilators to stretch it out

o   “Like dildos, but without all the fun colors”

§ 40 – 60 minutes of dilation a day

§ Vibrating dilator sets

§ “How is your relationship with your partner?”

o   Fertility

§ Angst!

o   Mental health

§ Important

§ Shame, stigma, anger, guilt, blame

o   Health maintenance

§ When you feel you’ve been lied to by physicians, you tend not to trust them

§ Screenings for cancer, colonoscopies, mammograms

-          Not much info if environmental issues are affecting the number of cases

o   One medication did

-          Nerve sensitivity/distribution different?

o   Not sure

o   Sometimes with genital surgery – non-orgasmic

-          Primary education/telling to other people

o   Just kind of describe how you feel, see what happens

o   Kind of like coming out

-          Culture formation vs. treatment?

o   (Kinda along the same lines as deaf culture)

o   Very conflicted…don’t really have the same kind of culture or community

o   “This is something very horrible that happened, but I’m glad that it did”

-          Genetic – mother had a mutation that got passed down

-          Sometimes it’s generational

-          Sometimes fetuses are aborted because of AIS à :(

-          Any dark side to the adoption process?

o   Lots of issues, but most of them are heterosexual couples

-          Overlaps with the LGBT community

o   Intersex group picketed a medical conference: half intersex, half trans

-          Did the emotions you go through lead to wanting to be a psychiatrist?

o   Yes

o   Consistent therapy since sophomore year of high school

o   Want to be a therapist to help heal others :)

-          There are lots of different ways to be a woman!

o   Women of all types: ultra marathoners, domestic goddesses, BOTH.

o   People just were who they were

o   Pediatric doctors weren’t helpful :/

o   Gynecologist was much better

-          Struggles for the partner?

o   Whatever, this is who you are

o   Infertility can become a very big deal

§ Divorce at times

o   What it means to be telling your story to so many people

-          Sometimes administer steroids to people with CAH

-          Medical school with LGBT and intersex education. Any good med schools for this?

o   Lots of schools are working on developing this

o   NY and San Fran are focused on this to some extent

o   Northwestern

o   Lots of this is student-driven