What is Leprosy (and the Village That Raised Me)

Leprosy shaped the world I grew up in. It shaped the people who raised me, the community that fed me, and the reason I eventually left Thailand at the age of 13. In this post, I'm sharing what leprosy actually is, how it affected my life, and the story of the village that raised me—and continues to stay with me in every pot I stir and story I tell.

Read more about what it was like growing up in a leprosy village here.

What Is Leprosy?

Leprosy, also known as Hansen’s disease, is a chronic bacterial infection caused by Mycobacterium leprae. Contrary to some common myths, it is mildly contagious and highly treatable. The bacteria primarily affects the skin, eyes, and peripheral nerves. If left untreated, it can lead to permanent nerve damage, physical disabilities, and deformities.

Leprosy thrives in warm, humid climates and has historically been more prevalent in tropical regions. Today, it is considered a neglected tropical disease by the World Health Organization. It is treated with a multi-drug therapy (MDT) regimen, typically provided free of charge by national health services and international organizations like the World Health Organization.

A Common Misunderstanding

There are so many myths surrounding leprosy—most of them untrue and deeply harmful. One of the biggest? That it causes body parts to “fall off.” That’s not what happens.

What actually occurs is that the nerve damage caused by the bacteria leads to loss of sensation, especially in the hands, feet, and face. Without pain signals, people unknowingly injure themselves—burns, cuts, and repeated trauma go unnoticed. Over time, these injuries can become infected, leading to disability or disfigurement.

I still remember watching my uncle hold his hand over a fire and not flinch. The smell of burning skin. He couldn’t feel it at all.

The Real Damage

The hands, feet, nose, and eyes are the areas most affected. People may lose the ability to blink, to walk without stumbling, or to feel when something is too hot to touch. Blindness is also a common outcome when nerve damage goes untreated.

If treatment is delayed, leprosy can cause lifelong complications. But if caught early, the disease is curable and damage can often be prevented.

Leprosy and Social Stigma

While the physical effects are significant, the emotional and societal toll can be just as devastating. In many parts of the world, including Thailand, people with leprosy have been shunned, isolated, and feared.

In the village where I grew up—one of 14 government-designated leprosy colonies in Thailand—people were separated from their homes and families. Once diagnosed, they were relocated, often by force, and made to live in isolation. Many struggled with depression, hopelessness, and suicide.

I saw this firsthand. These weren’t just patients. They were uncles, aunties, neighbors, caretakers—resilient, loving people who had been cast aside by a society that didn’t understand them.

Leprosy in Thailand: History and the Royal Response

In the mid-20th century, Thailand experienced a surge in leprosy cases. In response, the Thai government created a network of leprosy colonies where patients could live, receive treatment, and be somewhat shielded from the stigma they faced in public.

Government health officials were assigned to each village to distribute medicine and monitor care. These colonies eventually became self-sustaining communities, many with multiple generations of residents. Today, many of the original patients are elderly, and the younger generations (like myself) never had the disease—but we lived with the weight of it.

The Thai royal family, particularly Her Royal Highness Princess Srinagarindra (the Princess Mother), played a compassionate role. She frequently visited leprosy colonies and championed humanitarian healthcare efforts. Today, her legacy continues through programs under the Princess Mother’s Medical Volunteer Foundation and royal-supported hospitals, many of which offer care for patients with neglected tropical diseases, including leprosy.

How I Came to Live in a Leprosy Village

I was raised in one of these colonies in Surin Province. My second mother, the aunt who raised me, had leprosy. My uncle did too. They lived in a small stilt house built by the government on a few acres of dusty land.

Our house had no running water, no electricity, and no real walls—just wood slats and a tin roof full of holes. Rain leaked through, and at night I could see stars through the ceiling. We cooked on an earthen stove, raised ducks and chickens, and caught fish from the pond we dug ourselves. Life was simple, hard, and beautiful.

We may have been seen as outcasts by the outside world, but in that village, we were one big family. We shared food, chores, sorrow, and joy. When someone died or got married, the entire village showed up to cook and celebrate. That sense of community, despite the hardship, shaped me—and still feeds my soul today.

Dr. K and the Beaulah Land Services Foundation (BLS)

Dr. K—short for Dr. Kanchana Kongsuebchart—is one of the most remarkable women I’ve ever known. A well-respected doctor in Thailand, she gave up her prestigious career to serve people with leprosy full-time. She founded the Beaulah Land Services Foundation (BLS)—a Christian nonprofit dedicated to caring for the overlooked and forgotten. Learn more about BLS here.

Through BLS, Dr. K brought more than just medicine—she brought hope. She launched programs that provided education, vocational training, and agricultural support to families in leprosy villages across Thailand. Her work included:

• Volunteers and missionaries from around the world to help care for patients
• Nursery programs for young children of patients and workers
• Churches and spiritual support for those seeking comfort and community
• Occupational and physical therapy programs to help patients with mobility
• Water buffaloes, cows, fruit trees, and plants for families to raise and sell, increasing income and food access
• Educational scholarships for children to pursue higher education
• Partnerships with Thai and international supporters to fund projects
• Professional relationships with government officials to advocate for more aid

She built a network of compassion and empowerment—and during my last year of college, I witnessed the incredible scale of her work firsthand when I chose to go back to Thailand to study abroad. I stayed an extra six months to volunteer, live, work, and travel alongside her. During that time, I experienced strength, true dedication, and compassion like I’ve never seen before. She gave people a way forward, and created a ripple of change that continues to this day.

Dr. K passed away, but her legacy lives on in every child who received an education, every patient who walked again, and every village that found its voice because of her tireless work. Her life was a testimony of service, and her memory continues to inspire those of us she believed in.

The Woman Who Changed My Life

Dr. K is also the woman who forever changed the course of my life. She’s the one who brought my third mother—Rebecca—to our village. She told Rebecca my story, and the danger I was in. At the time, a corrupt local official had his eye on me, preying on vulnerable young girls like me. Dr. K looked at Rebecca and said, “If there’s any way you can help her—please, do it.”

That conversation changed everything.

Two years later, I was out of the village—and out of the reach of the corrupt official’s control. I began a new life in America, surrounded by safety and possibility. If you’d like to read more about how that journey unfolded, you can find it here: Seven Long Years: Returning to Thailand. 

Dr. K became a mentor, a nurturing mother-like figure, and a trusted friend. She visited our village often, brought medicine and support, and made it her life’s work to restore dignity to those cast aside by society.

When I lost my second mother and suffered a miscarriage, she opened her BLS home to me so I could heal. Years later, when I planted lime trees in her yard to honor my grief, one of those trees grew tall and strong. Just like the legacy she continues to build.

A Melting Pot Village

The people who were sent to our village came from many places. Most were from Isaan—the northeastern region of Thailand—but many also came from the north, from hill tribes, and from rural villages near the borders of Laos and Cambodia. What grew out of this was something rare: a small village that became a microcosm of Thailand itself.

We spoke many dialects—sometimes switching between Thai, Lao, Khmer, and tribal languages in a single conversation. Every home cooked a little differently, seasoned with regional spices and customs passed down through generations. Most of us could speak at least three languages fluently. The food, the culture, the laughter—it was a mosaic of survival and shared traditions.

The Generations Who Remain

Today, the original patients—what we call the first generation—are in their late 80s and 90s. Many have already passed on. The second generation, like myself, are their children. We never had the disease, but we grew up carrying the weight of the stigma. The third and fourth generations are now coming of age in these villages.

As the first generation disappears, many of these leprosy colonies are slowly transitioning into what society sees as "regular villages." The history remains, but the identity is shifting. What once was a place of exile is now a place of legacy. These stories deserve more time, and I’ll be sharing a deeper look into the different generations in an upcoming post—how life has shifted, what’s been passed down, and what’s quietly disappearing.

Read more about the different generations of people living in my leprosy village here.

Why I Share This

I feel a deep responsibility—as someone who lived among these people, who left, who came back, and who now gets to speak—to be a voice, a witness, and a storyteller. Their lives and legacies matter. They shaped me, and I get to help make sure they are not forgotten.

Continuing the Story: Feed My Village & More

If this story moved you, I invite you to explore more of what came from it. After years of being away, I returned to my village with my children—and with a mission. I started a project called Feed My Village to give back to the very people who shaped me, through meals, supplies, and shared dignity. It’s one small way of honoring the hands that once fed me.

You can read more about that journey and the ongoing work here:

• Seven Long Years: Returning to Thailand
• Thailand Highlights: What 4 Weeks Taught Me
• Feed My Village: The First Year

Stories are sacred. So is food. And together, they carry the legacy of where we come from—and where we’re going.

A Final Thought

If you take one thing away from this post, let it be this:

Leprosy doesn’t take limbs. It takes away the ability to feel pain. And that absence of pain is what leads to damage.

Pain, as much as we resist it, is a gift. It tells us what to avoid. It teaches us how to care. People with leprosy lose that ability—and with it, their connection to safety. That’s why those of us who’ve grown up around it understand: pain is a warning, but also a sign that our bodies are working.

Thanks for sticking with me. If you’ve made it this far, I hope you walk away with a little more understanding, a little more heart—and maybe a little more curiosity about a part of the world most people never see.

With love,
Suwanee

Learn More about Leprosy

To better understand leprosy and its history, here are some helpful resources:

• Leprosy Causes and Symptoms (WebMd)
• History of Hansen's Disease (Japan)
• Sarakawa Leprosy Initiative (Japan)
• American Leprosy Missions
• The Leprosy Mission (UK)
• Leprosy (Wikipedia)

Want to learn more about what it was like growing up in a leprosy village? Read my story and discover the history, resilience, and real life behind the label.