Tag: Intersex

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 my 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.

Being Intersex ain’t that easy

The one thing I often tell people that being an Intersex person and someone who has Kallmann’s syndrome isn’t easy or glamorous that many people think it is. What’s worse is how many people in the liberal left and LGBT try to sexualize and fetishize my Intersex condition. Which often times disgust me because it’s perverting my medical condition and my plight at the expense of their delusional ideology. It’s why have have fought so hard and so damn long to keep Intersex community and my intersex condition out of the lands of the liberal left and the LGBT, who tries to sexualize and fetishize my intersex medical condition. I just don’t like it when liberals and the LGBT sexualize and fetishize my intersex condition and what it means to be Intersex.

It’s why many people try and piss me off when they use my Intersex condition to push their perverted ideology or even the transgender ideology at the expense of my intersex medical condition. That’s why I get pissed at the liberal left and LGBT when they use my Intersex condition to push their agenda at my expense. On top of that, as an Intersex person I often times get pissed when people try to fake, pretend and lie about being Intersex to a REAL intersex person. Many of these Transgender people try to lie, fake and pretend to be intersex because they think that being intersex would lend some kind of legitimacy to their fetish. When in reality it makes them look foolish because being intersex, you have to show physical/biological and genetic DNA signs of Intersex. in which Transgender people don’t show any signs of Intersex. It’s why it pisses me off as an intersex person when people fake, lie and pretend to be something they can never be.

That’s why for me as an Intersex person, it ain’t easy being an intersex person and dealing with my intersex condition because their are a whole host of health issues that is associated with an intersex condition. With mines, being that I have Kallmann’s syndrome of the Kal-1 version. I doubt people would want to deal with being congenitally deaf in one ear. Loosing your ability to smell everything around you. Not being able to reproduce or bear children. Even being at extra HIGH risk for Bone and heart issues. Even having an extra Chromosomes in your body that can mess you up in so many ways. On top of that having gynecomastia and a really small micropenis that you hardly ever notice being their. On top of all that, having the fact that your intersex condition makes you look 10 years younger than your actual age. Above all that, I doubt any of the liberal left or LGBT would want to deal with having Vitiligo on top of my Intersex condition and having white spots and white patches on your skin.

It just makes you wonder, why would anyone in the liberal left and the LGBT would want to associate, claim or identify with something that can literally harm and kill you. Why would they want to sexualize, fetishize or identify with something that can damage your body to the point of no return. In my case, i’m born intersex from birth and from the day I came into this world in a refugee camp. I’m always gona be Intersex and my Biology, DNA and Chromosomes is always gona say Intersex and Kallmann’s syndrome. I can’t change that and that’s the cards I’m dealt with and those are the cards I’m gona play with until the day they put me in cryonic suspension.

On top of all that, for me as an Intersex person, I don’t care for sex, gender or gender identity issues. Those are issues I don’t dare touch or go to because dealing with my Intersex condition is enough on my plate to deal with. To deal with sex, gender and gender identity issues, is something that would put me over the top, stress me out and would be a nightmare for me. It’s why medically, my doctor won’t even list me as male or female because it’s hard enough to deal with being Intersex, let alone dealing with trying to fit into the Male or female system. It’s easier on me because that way I am not pressured into the male or female system. For me, it’s why I tell people that, they can have all the sex, gender or gender identity issues. I just want to simply live and survive on this planet and deal with my intersex condition. I don’t want all that sex, gender or gender identity issues in my life.

It’s why many people who think being Intersex is easy or being intersex is a sex, gender or gender Identity. I’d be glad to let them have my medical condition and all the health issues that comes along with my medical condition. If they think being Intersex is easy, I’d be glad to let them try it and see what it feels like to be sterile, can’t reproduce, can’t hear, can’t smell and be at risk for bone and heart issues. The reality for me is that being Intersex is not easy as the LGBT and liberal left likes to think it is. It’s hard and often times, it’s full of land mines because my DNA determines alot of what I am at risk for as I get older and older.