My name is Sami Yusuf Baker. I am 19 years old, and I live in a small village in the Kurdistan Region of Iraq. I was born with ichthyosis, a rare genetic skin condition that some people call “fish-scale skin.”

I want to tell you what that means, not as a medical case, but as a person.

Every day with my skin

My skin is always dry and thickened. It itches constantly, and sometimes it cracks in ways that are painful. There is no day off from ichthyosis. It is there when I wake up, when I walk outside, and when I try to sleep.

To keep my skin soft, I use Vaseline. It helps a little, but it does not stop the itching or the cracking. I know there are better treatments in the world, but my family’s financial situation makes them very hard to afford. So, like many people living with rare conditions, I manage with what I have. I have learned to be patient with my body, even on the hard days.

The pain people cannot see

If you ask me what the most painful part of ichthyosis is, I will not tell you about the cracks or the itching. I will tell you about people’s faces.

Many people look at my skin for only a few seconds and decide something about me. Some step back. Some are afraid to come close. They think my condition is contagious. It is not.

Ichthyosis is genetic. I was born with it. Nobody can catch it by shaking my hand, sitting beside me, or talking to me. But when people do not know this, fear fills the space where understanding should be. That fear can hurt more than my skin ever does.

Living with a rare condition in a small village also means that very few people around me have ever heard the word “ichthyosis.” There is no one nearby who has the same condition. Sometimes that makes me feel very alone.

My family, my strength

What has carried me through is my family. They never asked me to hide. They never treated me as less than anyone else. Their love gave me the courage to look at myself honestly and to speak openly about my skin, instead of feeling ashamed of it.

Because of them, I decided that I would not stay silent.

Why I chose to share my story

I started sharing moments from my everyday life on TikTok (@sami.not). I did not do it to be pitied. I did it because I believe that when people understand, they stop being afraid.

I am not asking anyone to feel sorry for me. I am asking people to see me as I am: a young man with feelings, hopes and dreams, just like anyone else. My skin is only one part of who I am.

What I hope for

I hope my story reaches parents whose child has just been born with ichthyosis or another rare condition. I want them to know that their child can grow up loved, confident and strong.

I hope it reaches young people who feel ashamed of how they look. You are not alone, and you have nothing to be ashamed of.

And I hope it reaches people who have never heard of ichthyosis. If you ever meet someone whose skin looks different, please do not step back. Say hello. Ask, if you are curious. A kind word can change someone’s whole day.

No child who is born different should ever feel ashamed, rejected or alone. My skin may be different, but my heart, my hopes and my humanity are the same as yours.

Thank you for reading my story.

Sami Yusuf Baker
TikTok: @sami.not