Tag: Rare Disease

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.

Rare Disease day

Today is Rare Disease day and I want to take this moment to let people know that as someone who has Kallmann’s syndrome and is born with an Intersex/DSD condition. I’m supporting Rare Disease day 2016 and bringing to light the fact that people like me who are Intersex/DSD have a Rare disease. I have a Rare Disease call Kallmann’s Syndrome and I’m living proof that I am surviving and thriving with my Rare Disease.

I’m living proof that I can live very comfortably with my rare disease and even thrive in it. Being an Intersex/DSD person and having a rare disease call Kallmann’s syndrome is proof that I never let me rare disease bring me down. I never let my rare disease be a handicap and instead it empowers me and often times inspires me to be myself and do great things. What’s nice about that is, i’m going to be one of the very few people who have a Rare disease and an Intersex/DSD condition graduate from college with a Bachelors degree in May. That’s an accomplishment and an achievement in itself.

So today, please thank those who are celebrating Rare Disease day 2016 and thank those who have a Rare Disease and are alive today. I’m thankful that I am living proof that I can survive and thrive with my rare disease and live to tell about it. So today is a day that people like me who have a Rare Disease can celebrate it and talk about it.