I was born with lamellar ichthyosis. In case you haven’t heard of it, then you are one of the reasons I am here to share my story. People with lamellar ichthyosis have large, dark, plate-like scales covering their skin on most of their bodies. It looks like an extreme form of dry skin.

From experience, I can tell you that it feels worse than it looks. Living with this condition is not an easy journey but with my mother’s unwavering love and support, I am doing it.

When I was a child, I was always conscious of my appearance. The constant itching and flaking of my skin didn’t also help matters. I am sure anyone reading has had an itch at some point in their life. Imagine going through life constantly dealing with that uncomfortable and irritable feeling.

I would watch as my friends played under the sun but I dared not join them. At that age, I saw the sun as my nemesis. A little exposure had my skin crawling with tiny itches.

As I got older, everything I felt about myself as a child intensified. I felt people were always looking at me. It was even worse whenever I caught someone trying so hard not to look at me. I would ask myself, “If I didn’t look like this, would this person feel uneasy in my presence to this extent?”

The mere thought that people didn’t know how to act around me burdened me. There were others who didn’t also know how to keep quiet. They called me awful names. Crocodile, maggot, among others.

In the end, I decided to help everyone by covering the problem. Yes, I hid under the cover of long sleeves.

The weather here in Ghana is mostly sunny. This means that I experienced literal hell every time I wore those long sleeves. Sure, they helped me feel less like a spectacle and more human. If people couldn’t see my skin then they wouldn’t be conflicted about whether or not to look at me. I too wouldn’t feel like my existence was a bother to them.

However, I always got sweaty under the long sleeves. I would scratch and endure the discomfort just so I could have some semblance of a normal life. The good thing is that I didn’t do it alone. My mother did everything she could to help me manage the discomforts.

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She would apply thick moisturizers and ointments to my skin. She was doing all this with the hope that I wouldn’t look dry when we stepped out. I don’t know what I would have done without her.

Unfortunately, my father’s side of the family rejected me because of my condition. That’s why I’m forever grateful to my mother and brother, who never rejected me. They have showered me with unconditional love. The kind that softens the blows the world throws at me.

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I believe that having the right support system is the most precious thing in the world. My support system is the reason despite everything I have experienced, my spirit remains unbroken.

One of the biggest misconceptions about lamellar ichthyosis is, that it’s contagious. I’d like to take this opportunity to raise awareness about this condition and help dispel this myth. By sharing my story, I hope to promote understanding, acceptance, and inclusivity for those living with lamellar ichthyosis and other rare skin conditions.

— Eme

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