Tag: Rare Disease

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.

A rare breed of Human being

What many people don’t know and how rare it is, is that I have two rare medical conditions and that’s pretty rare for many human beings on this planet. I am very rare as they come on this planet because I have Kallmann’s syndrome and Vitiligo. It’s very rare for someone to have to rare conditions that they are facing and dealing with on a daily basis. The fact that I have Kallmann’s syndrome and Vitiligo, I hold the unique distinction of being a person who has two or more rare diseases. It’s why I hold the distinction of being the only known person to be diagnosed with Kallmann’s syndrome and Vitiligo.

What makes me very unique is that I have Kallmann’s syndrome of the Kal-1 gene. It’s very rare because of the fact that in my version of Kallmann’s syndrome and being Intersex is that I can’t hear at all in one ear. I can’t smell anything at all. I have a very small micropenis that I barely notice being their. I have some breast development and above all, I am rendered sterile and can’t reproduce for the rest of my life. What makes me unique in all that is the fact that I’m neither male or female because I don’t care less about sex, gender or gender identity because it’s bad enough to deal with a rare medical condition and then have to deal with all the sex, gender or gender identity bullshit. I’m just simply trying to be human being and trying to deal with my rare condition without having that sex, gender or gender identity bullshit imposed on me. It’s why my doctors will never list me as either male or female because it would stress me out and instead i get to choose I how I want to be listed and what’s comfortable and stress free for me.

The other thing that makes me very unique is that I have Vitiligo, which is a disease that causes my skin to lose it’s pigmentation. Which means on my skin, I have blotches of white patch on my skin where the skin pigment loos it’s color. I have had Vitiligo for a very long time and no one ever noticed it until I was seen by a dermatologist. That’s when they told me my Vitiligo was really that bad. I have skin pigment loosing their color in all parts of the body including the genital area. It’s why because I have Vitiligo, I am one of the very few people who can legitimately wear makeup to cover up the Vitiligo. What’s nice about the fact that I have Vitiligo, is that I am in good company with very famous people who have it, such as Micheal Jackson who was diagnosed with Vitiligo. It’s why i’m fortunate that my Vitiligo has a very famous connection and a celebrity status.

It’s why being the only person known to have two rare medical conditions makes me very unique person. I’m very rare because I have Kallmann’s syndrome and Vitiligo. I’m also very rare that i’m one of the very few Intersex people to have two rare conditions. It’s why it makes me very unique that you hardly see another human being with two rare conditions in one body and it’s why I am often times studied by doctors, so they can learn more about me and why I have Kallmann’s Syndrome and Vitiligo. It’s why I am a very rare breed of Human being and I am very rare as they come.