When people ask me why I post about scleroderma, I often smile wryly before answering. Not because the question is funny, but because until about four years ago, I had never even heard the word scleroderma—until it knocked on my door. Scleroderma has become part of my story—not by choice, but by fate. And through it, I’ve discovered a new kind of strength.
Let me start with what scleroderma is—and what it isn’t.
Scleroderma is a chronic autoimmune disease. The name comes from the Greek words skleros, meaning hard, and derma, meaning skin. Simply put, it means “hard skin.” But that’s only the surface. Scleroderma goes far beyond the skin.
In autoimmune conditions, the body’s immune system mistakenly attacks its own tissues. In scleroderma, this attack leads to an overproduction of collagen—a protein that helps build connective tissues. The result? Thickening and hardening of the skin and, in many cases, damage to internal organs like the lungs, heart, kidneys, and digestive system.
It’s rare, affecting an estimated 2.5 million people worldwide. But for those of us living with it, it’s an everyday reality—and many of us joke that if we could mine the excess collagen we produce and sell it, we’d be rich.
Scleroderma is not contagious, and it’s not “just a skin disease.” It’s not always visible, and it’s not a death sentence. However, it is unpredictable, exhausting, painful, and emotionally taxing. People react to it differently, which means there’s no one-size-fits-all treatment plan.
There are two main types:
- Localised scleroderma, which affects the skin in isolated areas and is more common in children.
- Systemic sclerosis, which affects the skin as well as internal organs. This is the form I have.
Within systemic sclerosis, there are further subtypes: limited and diffuse. Diffuse tends to progress more quickly and affects more internal organs. Limited progresses more slowly but can still be life-altering.
For many of us, symptoms began with something seemingly harmless—cold fingers that turned white or blue, known as Raynaud’s phenomenon. From there, the journey unfolds unpredictably: fatigue, stiffness, swollen joints, acid reflux, shortness of breath, skin changes, and sometimes frightening complications involving the heart, lungs, or kidneys.
Mine started with allergy-like welts all over my body. After several visits to the dermatologist and a series of tests, I was told I wasn’t allergic to anything. Then I began to notice salt-and-pepper spots on my cheeks, which I assumed were age spots or menopausal symptoms. My scalp started to peel. I experienced fatigue like I’d never known—it took immense willpower just to dress myself or walk short distances. Eventually, I noticed my mouth was no longer opening fully.
I went to the dentist, but the X-rays and exams showed nothing wrong. Then I returned to the dermatologist, who ordered an autoimmune panel. Two weeks later, the results came back: I tested positive for both scleroderma and myositis—an overlapping immune condition. I was immediately referred to a rheumatologist, who ordered a battery of tests, gave me vaccinations, and started me on steroids and immunosuppressants.
A rare disease diagnosis often brings relief and grief in the same breath. Relief that you’re not imagining things. Grief because your life will never be quite the same again. I was told there was no cure—only management. And so began the slow, humbling, sometimes heartbreaking process of adjusting to this new normal.
Managing scleroderma requires a team. My journey will include visits to:
- Rheumatologists – the central figures in diagnosis and management.
- Pulmonologists – monitoring my lungs for fibrosis and breathing issues.
- Cardiologists – checking my heart for any strain or complications.
- Gastroenterologists – managing reflux, swallowing difficulties, and gut motility issues.
- Dermatologists – watching skin thickening and pigmentation changes.
- Physiotherapists and occupational therapists – helping me stay mobile and functional.
These professionals form a web of support, but navigating the healthcare system is often a battle of its own especially in countries such as ours where awareness and resources are limited. The daily drugs and routine tests are expensive and the dearth of doctors makes it more challenging.
One of the hardest things about living with scleroderma or most autoimmune disorders is that they are often invisible. You may see my smile, my outfit, my voice on the radio, but unless you live with me , you may not see the fatigue that drapes over me like a heavy blanket, the stiffness in my mouth, or the breathlessness that makes even a flight of stairs feel like Everest. There are mornings when I wake up feeling good only to get out of bed and immediately feel fatigued, when my skin feels so tight like it’s wrapped in cellophane. Yet, I get up. I show up. I laugh. I work. I love. Not because scleroderma is easy, but because I refuse to let it define me.
In many countries, including developed ones, the awareness of scleroderma is shockingly low. Patients are misdiagnosed, misunderstood, or dismissed. Healthcare professionals are sometimes unfamiliar with the disease. Insurance coverage is lacking, and affordable care is often out of reach.
But change is possible and the motive behind the world scleroderma awareness day which is celebrated every 29th of June is to :
- Raise Awareness – Through media, public health campaigns, and education, so more people can recognize early signs and seek help sooner rather than think they are being spiritually attacked.
- Combat Stigma – Chronic illness isn’t laziness or weakness. The fatigue is real and can’t be explained, also the changes in people’s physical features makes them withdraw socially.
- Support Inclusivity by urging employers, educators, and communities to create safe spaces for those with invisible illnesses.
- Encourage Community Support – Support groups, online forums, and local networks which offer emotional lifelines to patients and caregivers alike
Our governments need to take chronic illnesses seriously. People living with scleroderma and similar autoimmune conditions like Lupus deserve:
- Subsidized access to medications and therapies.
- Specialist training programs for doctors and nurses.
- Disability recognition for those severely affected.
- National registries to collect data and fund research.
- Partnerships with international foundations to improve diagnosis and care.
In many countries, access to a rheumatologist is a privilege and in Nigeria there are less than 40 Rheumatologists . This should not be the case. Healthcare is a right not a luxury.
If you’ve listened to my radio show or followed my work, you’ll know I believe deeply in stories. Stories heal. Stories connect. Stories make us human. And that’s why I share mine. Scleroderma has tested me in ways I never imagined. It has taken things from me spontaneity, strength and simplicity. But it has also given me things: purpose, perspective, empathy and people.
I have met fellow warriors as we call ourselves ,some older, some just children whose resilience humbles me daily. I have discovered how deeply I can love myself even in my brokenness. I have learned to ask for help, to rest, to let go and to pace myself. My life now is one of careful management of medications, symptoms, appointments, and emotions. But it is also a life of meaning, of moments, of advocacy. And if my voice can bring just one more person closer to understanding scleroderma, then this journey will not be in vain.
If you’re newly diagnosed, don’t be afraid. You are not alone. Connect. Learn. Speak up and keep showing up for your life. Scleroderma is not a death sentence.
If you’re a caregiver — thank you. Your support is medicine and don’t forget to care for yourself too.
If you’re just now hearing the word scleroderma for the first time — welcome. Keep learning. Keep sharing. We need you in this fight.
Because even though this disease hardens the body, it softens the heart.
And in the end, that may be the greatest strength of all.Photo credit