Tag: Rare Disease

Why Intersex conditions are Rare diseases

I know lately, I have been getting arguments with people and especially those in the LGBTQ who try to claim that Intersex is not a medical condition or a rare disease. Many of those who I was arguing with tried to claim that Intersex/DSD is a sex, gender, gender identity and sexual orientation. What they tried to argue with me about is that they think that being intersex is something people can identify with, without having been medically tested and having a DNA Karyotype. In reality, having an Intersex/DSD specific condition such as Kallmann’s syndrome, Klinefeltners, AIS and CAH are considered Rare diseases by the medical science community. Which is why when it comes to Intersex/DSD conditions, they are really Rare diseases and very rare in human beings.

What many in the LGBTQ try to pull is the sexualization crap on Intersex/DSD conditions. They try to sexualize intersex/DSD conditions and try to use Intersex/DSD specific conditions to justify and politicize the LGBTQ at the expense of Intersex/DSD people. What that dose to Intersex/DSD people is that it harms them by conflating them with the LGBTQ and erases intersex/DSD people’s upbringing and their Medical/social experience. When the LGBTQ sexualizes and politicizes Intersex/DSD people, they are in effect erasing Intersex/DSD people and using Intersex/DSD conditions to further their agenda at the expense of Intersex/DSD people.

It’s why, when it comes to Intersex/DSD conditions, their is nothing LGBTQ about being born with an Intersex/DSD condition. Intersex/DSD conditions, if your boil it down to it, it’s really a Rare disease because of how rare someone can have an Intersex/DSD condition and the statistical odds that someone can be born with an Intersex/DSD condition. Intersex/DSD is a rare disease mainly because the current limits of Medical science today can only do so much for every Intersex/DSD condition. It’s why, the current medical science today can only do so much to keep the person healthy. What makes Intersex/DSD conditions a Rare Disease, is the fact that every intersex/DSD condition renders a person sterile for LIFE. The current reproductive medical technology today, is extremely limited in getting someone with Kallmann’s syndrome, Klinefeltners, AIS and CAH to reproduce, bear children and have a normal sexual reproductive life.

Which is why, when it comes to being born with an Intersex/DSD condition, I don’t see it as a sex, gender, gender identity or a sexual orientation that anyone can claim. In order to claim Intersex/DSD, you’d have to have show, physiological, biological and anatomical signs of an Intersex/DSD condition. On top of all that, every Intersex/DSD condition is DNA based and as such, if you never had your DNA Karyotype, you wouldn’t know if your Intersex/DSD and that’s how Medical science determines what’s considered Intersex/DSD and what’s not. It’s why in my case, I have been DNA Karyotyped so much that the US Government knows I am Intersex/DSD and the National Institutes of health has my DNA on file.

When it comes to having a Rare disease, Yes, Kallmann’s syndrome is an Intersex/DSD condition and yes it is a Rare disease. It’s rare disease because of the statistical odds that someone can be born with Kallmann’s syndrome or an Intersex/DSD condition. It’s a rare disease because of the current limits of medical science when it comes to treating and possibly curing any Intersex/DSD condition. It’s why when it comes to arguing with the LGBTQ, i’d say that Intersex/DSD is NOT a sex, gender, gender identity or a sexual orientation but instead is a Rare disease. Intersex/DSD is a Rare disease because of the statistical numbers and the current limits of medical science when it comes to treating and possibly curing Intersex/DSD condition.

Why the LGBT model is harmful to Intersex people

Being an Intersex person and an Intersex activist, the one thing that always pisses me off is how the Intersex community is using the LGBT model to make themselves well known. That’s all fine but then it comes with problems and issues I think the Intersex community didn’t think this through and throughly. For one, the LGBT model sexualizes Intersex people and it simply reduces Intersex people to a sex, gender, gender identity, sexual orientation and genitals. The LGBT model trivializes what it means to be born Intersex and simply makes a mockery of those who are born Intersex from birth. It also makes it where anyone can claim to be Intersex without all the Medical testing that Intersex people had to go through in order to be listed as an Intersex person. It’s why I am dead-set against the Intersex community using the LGBT model.

The one model I think that Intersex people and the Intersex community should be following is the rare disease model. That’s because in reality, Intersex is really a Rare disease and not some sex, gender, gender identity or sexual orientation. The reason why Intersex should be seen as a rare disease is because Intersex conditions have a whole host of health issues that I think no one in their right mind would ever want to claim. Who in their damn right mind would want to claim something that has health issues that can harm you for the rest of you life. On top of that, being born with an Intersex condition, it’s not a sex, gender, gender identity or sexual orientation. Intersex, by itself is purely a medical condition and not some label or identity that someone can claim.

It’s why as an Intersex person, I am dead set in using the LGBT model to get acceptance and understanding. All the LGBT model dose is harm Intersex people and it even forces parents of Intersex kids into all the needless, unnecessary and very traumatic surgeries that can be harmful to Intersex people in the long run. On top of all that, the LGBT model erases what it means to be born with and intersex condition and what it means to grow up as an Intersex person and having an Intersex condition. That’s why I am all for the rare disease model and I think the rare disease model would help Intersex people in the long run such as getting proper medical care and treating the symptoms that come along with our medical condition. On top of that, the Rare disease model would get Intersex people more recognition, which would lead to more acceptance and understanding than the LGBT model

The Unknown side of Rare Disease

As someone who’s Intersex and who has Kallmann’s syndrome and Vitiligo , I know the reality is that my rare disease is not that popular or on people’s radar. My rare disease is always hidden from view and largely unknown to many people in society. Many people I encounter along my travels in life never know I have Kallmann’s syndrome and Vitiligo unless they see it or ask me. It’s why many people largely don’t know that I have a rare disease and it’s largely very silent in the background. It’s why my rare disease is something most people won’t know unless they ask me what is it and why I have it.

When your the one who has a rare disease like mines, you often times feel invisible and hidden in plain sight. You often feel like your fighting a battle on your own and many times you don’t have any friends or allies who understand what your going through and what your dealing with. Many times, people don’t know what it means to have Kallmann’s syndrome and Vitiligo. People in society don’t see the faces of those who have a rare disease and even the ones that are not popularized or supported by celebrities. My rare disease, Kallmann’s syndrome doesn’t have a current face or celebrity attached to Kallmann’s syndrome. My Vitiligo on the other hand, is well known and attached to a celebrity such as Micheal Jackson who had Vitiligo. It’s why I tend to live in both ends of the spectrum of rare disease where I have one that is largely unknown and hidden from view and the other that is well known and attached to a famous celebrity that had one.

What many people don’t see is that I am as far rarer as they get as a human being because I’m one of the very few people who has two rare diseases in one body. I’m one of those who has Kallmann’s syndrome and Vitiligo and I’m pretty rare as they come. I’m that rare because who else on this planet that can have two rare diseases in one body and still be kicking around.  I know that not many people have that ability and to me, that makes me rare and unique as a human being.

Sadly though, my two rare diseases doesn’t make me that popular or cool because it’s not something that people rarely get to hear or talk about. It’s something that is largely hidden from view and largely ignored because my rare disease is not trendy or popularly supported. It’s why you don’t hear any stories of people who have Kallmann’s syndrome and Vitiligo. Even you don’t hear any celebrity talking about themselves or their kids having Kallmann’s syndrome or Vitiligo.

It’s why my rare disease will largely remain an unknown to people because no one bothers to hear anything about people’s rare disease and how they learned to struggle, adapt and overcome things. Even ignore the ones that are not hip, popular or trendy in the eyes of public. It’s why my Kallmann’s syndrome and Vitiligo will rarely get the attention, spotlight or any fame attached to it. The reality is, that I am an Asian American and a Laotian American who is living with an intersex condition called Kallmann’s syndrome, a skin condition called Vitiligo and my rare diseases are largely unknown and hidden from view.