Meet Htwe T. – Myanmar

My name is Htwe Than. I am from Myanmar (Burma), a beautiful Southeast Asian country. Born in 1973, I am now 53 years old, working full-time as a secondary school teacher and teacher’s trainer. I was born with lamellar ichthyosis, and also recently diagnosed with rheumatoid arthritis. For me, ichthyosis simply part of who I am, and I accept it as myself. Out of my four sisters and one brother, I am the youngest—and the only one in my family born with this skin condition.

For a long time, my health overshadowed my life. I endured an unhappy past during my school years and within my social circles because I wasn’t healthy like those around me. But today, I no longer care about the judgments of others. For nearly 25 years, I lived in hiding, too timid to pursue my dreams. I wanted to be a teacher. I wanted to travel and explore the world. I wanted to write, to sing, and to inspire young students. Today, despite my limited physical strength, I am doing all of those things.

Heat is my greatest enemy, and I have had to learn how to trick it. When I find myself in 45°C weather, surrounded by strangers who stare at my flushed, scaling face as if it were a sideshow, I keep smiling. Internally, I am highly cautious, always locating the nearest water source. I frequently soak my body, hands, legs, and neck with water—even while standing and teaching in front of an audience. I explain what is happening to them in a calm, normal tone. To survive with dignity means letting go of trivial embarrassments, like public cooling breaks, so that my professional life can keep rolling forward.

Nutrition is my second major challenge. Because I am fiercely determined to live on my own terms, I rarely visit doctors for nutritional advice. When stress takes over, my eating and sleeping habits suffer. My body signals this immediately—my skin stops renewing itself and becomes rigid, a clear warning sign of dehydration and malnutrition. When that happens, I know I must stop, return home, sleep, take a break, and reset before returning to work.

It might surprise you to know that I rarely see doctors. I simply lack the patience to line up, wait, and spend limited time and money in a healthcare system that severely neglects its people. Out of necessity, I am on my own. My intuition is my guide; sometimes it leads me astray, and sometimes it is exactly right. Either way, I am still alive. I am blessed with a highly supportive family—my brother, sisters, nieces, nephews, and friends. Even so, I am deeply cautious about becoming a burden to anyone. Sometimes, this protective instinct forces me to struggle harder, leaving me more tired and stressed than I need to be.

To manage my skin, Cetaphil products help me present a normal exterior to the world. I also constantly long for a hot bath, regardless of whether the weather outside is freezing or scorching. Eating organic, MSG-free food, drinking gallons of water, and getting adequate rest vastly improve my health. However, I can be a bit rebellious; working full-time, occasionally in remote areas, means I often neglect these routines. I enjoy drinking beer, wine, and sometimes whisky. Even though alcohol dehydrates me and goes against traditional Myanmar culture, I still indulge. I balance this by taking daily vitamins. I am also deeply attached to social media to stay connected with our country’s daily political struggles, though I suspect the high emotional toll makes my skin even drier.

Living with ichthyosis has taught me to clearly separate true dignity from trivial shame, and genuine strength from perceived weakness. I am never ashamed to speak out about how I feel or what is happening to my body. I complain openly to others about my daily physical soreness and pain. To me, expressing pain is not a weakness; it is a simple acceptance of my body’s reality. The most important thing is to remain a human being filled with passion for my work, a curiosity for life, and a fierce will to survive as honestly as I can.

My mother passed away recently, and I am currently navigating the deep depression of that loss. But through the grief, I am still here, surviving, and continuing to do exactly what I want to do.