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.

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