What can you say my story of how I was born as an Intersex/DSD person and living my life is as unique as the next person. I’m no different from anyone else, other than being born with an Intersex/ DSD (Disorders of Sexual development) from birth, having a biological indeterminate gender, being deaf in one ear and being neither male nor female. I’m born with an Intersex/DSD condition called Kallmann’s syndrome. Which many may not have heard about because it’s a rare genetic condition.
My Story starts when I was born in May of 1976 in a Thailand Refugee camp. My folks escaped the aftermath of the Vietnam War and the communist party in Laos. Being born in a refugee camp in Thailand, medical care was as bare as you can get. It was only enough to keep you alive until you were allowed to migrate to the United States or any western country. Medical care in Refugee camps were substandard and not up to Western standards of the time I was born. So I was born in a very primitive way.
When I came to the United States of America in the fall of 1976. I was an Infant and was made a US Naturalized Citizen in 1983. At the time I didn’t know what Boys and girls were supposed to look like. Even when I was born, I was given a Laotian Girls name called Nilavong and to this day it’s the name that’s on my Thai birth certificate and on my US Naturalization Paper’s. My full legal name on my US passport and US Naturalization papers is Nick (Nilavong) Khamhou Dethoudom Chaleunphone. At the time I was born, I was given that Lao girls name because they thought I was a girl and didn’t know what Intersex or what DSD is at that time period. When I was a little older my folks decided to change my name to Americanize me and give me a more gender neutral name, which the name Nick was given to me.
How I got diagnosed as an Intersex person with Kallmann’s syndrome is that during my childhood, I came down with Pneumonia in the late 1970’s and my folks took me to New Britain General Hospital. During the physical exam, the ambiguous genitalia drew the attention of medical staff and were seen by the Pediatric Endocrinologist. Then they sent me to the University of Connecticut Health center to be tested and treated. I was under the care of Dr Karen Rubin and her team who treated me. They ran me through a battery of test from physical exams to smell testing to having blood drawn for hormone levels and DNA karyotyping. It was a painful time because most of the time, I was taken away from school to tested by Dr Karen Ruben for Intersex and to be poke and prodded by her medical team. Even having a measuring tape used on me to measure my ambiguous genitals. Which was scary and you didn’t know why it was being done to you.
The one highlight out of all that was the forced genital surgery I had in 1984 at Hartford Hospital. I was there for one week at Hartford hospital to have that genital surgery done at the behest of Dr Karen Rubin. When that happened, I didn’t know what they were doing to me and why. No one even told me why I was at Hartford hospital and what was being done on me. I was put there as a kid to have the surgery done by Dr Karen Rubin and the surgeon. I spent one week at Hartford Hospital and since then have the surgical scar to show what was done.
Even after the surgery 1984, I started taking testosterone for no clear reason and no one from the Doctor to my folks and down to the nurse who started injecting me with testosterone could not explain to me why I was given testosterone. Even as a child and a teenager, I was never given a good explanation about why I was being injected with testosterone. The one line I had from a pediatric endocrinologist who treated me during my teenage years tried to explain to me why was because “to build me up as a Man”. It was the one line I had to buy from him without question or reason.
Growing up, was very tough for me. I didn’t know what I had or what I was. I always felt weird or strange because when I was younger, I didn’t know what to make of myself. I grew up basically a tomboy because I was never part of the boys or never part of the girls. I always felt like I was an alien from another planet. I always felt I was different growing up mainly because I never fitted in with anyone. I felt like I was an outsider between both sexes because being intersex. I never fitted into either one of them.. Even looking at my childhood pictures, I always looked very young, mostly tomboyish like. Even when I was born, I was given a Thai girls name because when I was born, they didn’t know if I was a boy or a girl. It was confusing about what to make of me and if I was a defect or a deformity. The Thai girls name they gave me at birth and is on my US naturalization paperwork is Nilavong, or Nila. It sounds girlish like in Thai and in Laos. I kept that name until me and my folks immigrated to the US and in the US they changed my name to Americanized me and gave me a gender neutral American name. I still have my Thai name when I go back to Thailand and Laos, but I still have my American name as well.
The way I found out about what was done to me was that during High school in the 1990’s. I was gonna play sports such as Cross country and Track & field. I had to get a physical and my medical records to play. When I got a hold of my medical records, I learned what was done to me during my childhood. I started reading the story and realizing that what I have and born with is called Kallmann’s syndrome. They listed it on my pediatric medical records back then as an Intersex person with Kallmann’s syndrome. Even on my adult medical records they list it as an Intersex person with Kallmann’s syndrome. I learned from reading my medical records that the forced genital surgery I had in 1984 was that my folks at the time wanted to make me look as a normal male. Despite that it was never going to happen naturally or medically. All it was to make my folks happy and not me. One of the surprising facts that when I was younger I was tested for AIS and tested to see if I was a candidate for childhood SRS. That was because the surgeon at the time felt that I would never reproduce as a normal biological male and wanted to turn me into a girl to save me from the physical and psychological trauma. The fact at the time I had a really small penis and the surgeon thought my reproductive future would be very poor. Though that was overruled by Dr Karen Ruben and the results of that test were never made available to me or Dr Karen Rubin.
Now, I get treated by a Nurse Practitioner who specializes in Intersex/DSD people and endocrinology. She treats me as an Intersex person and a DSD person. She doesn’t hold me to the Male standard because Naturally, I would not fit the male standard but instead I am medically induced to look like a male. She treats me as a biological indeterminate gender because medical science can’t pin gender on me. She treats me according to the DSD standards of medical care and makes sure my hormone levels are in check. She and I know that testosterone is never going to make me look like a normal man, but all its doing is keeping my bones healthy and giving me the energy to get through the day. It’s why she will never give me estrogen because it will close off the bone plates and put me at a very high risk for osteoporosis. The nice thing about her is that she doesn’t treat me like one of the guys because she knows I will never be a normal guy. She knows I am an Intersex/DSD person who is stuck in the middle.
The one thing I am lucky about having Kallmann’s syndrome is that people especially women look at you as being younger than your age. I get comments that I’m lying about my age or that I look ten years younger than my age. I actually call Kallmann’s syndrome the “your lucky syndrome” because I am lucky enough to get away with looking 10 years younger than my age. I still shock people when I tell them that I am 40 and people tell me that I don’t look like I am 40. I think that most of the girls and women get shocked and surprised that I look younger than my age. One of the biggest comments I get is about my medication patch that I have to wear. When people see that patch, people think I am quitting smoking. When I tell them what that Androderm patch is, they get the surprised look and shock because, they never knew what the patch is for.
As far medical diagnosis, is that I am confirmed to have Kallmann’s Syndrome of the Kal-1 variation by the National Institute of Health, in Bethesda, MD. Which is why I can’t smell anything at all. On top of that my hearing loss, which is connected to Kallmann’s syndrome is because of Right Sensorineural hearing loss with congenital absence/marked hypoplasia of the right cochlear nerve. Which also means that I also have Mypoia, exotropia right eye, mild amblyopia left eye. On top of having Kallmann’s syndrome, I also have a missing or a deletion in chromosome 16. Which makes me one unique person, with unique medical issues.
So basically for me as an intersex/DSD person, I live a pretty interesting life and existence. I’m lucky to be younger looking than my age and I am lucky enough to be born intersex and being born who I am. I’m glad that they didn’t cut me when I was younger, but I still wonder why I had something pushed down in my body and I wonder why I had something that looked like an ovary pushed down to look like a testicle. I also wonder why I was dragged to doctors office a lot and I wonder why I had to take those meds that the doctors gave me and wonder why I fell for the lie that the doctors told and gave me.
That’s my story on how I was born with an Intersex condition called Kallmann’s syndrome and how I was diagnosed and treated