How Scleroderma Has Changed My Life

Scleroderma changed my life by transforming the way I care for my family, shaping the person I am becoming, and teaching me the true meaning of resilience. Scleroderma entered my life quietly, almost deceptively, disguised as swelling in my mother’s hand during one of the most emotionally devastating seasons our family had ever endured. It did not announce itself with urgency or drama. Instead, it waited, growing in the background while my mother did what she has always done best: take care of everyone else first.

Two years ago, our family was already in crisis. Over Christmas the previous year, my two stepbrothers lost their mother to suicide, a tragedy that shattered the emotional foundation of our household. Grief arrived abruptly and without permission. It overwhelmed our routines and changed every part of our daily lives. My brothers spiraled into profound emotional and behavioral distress as they attempted to cope with the unimaginable. Sleepless nights, days without eating, anxiety, PTSD, and trauma-induced compulsive behaviors consumed our home. My mother dedicated every ounce of her energy to making sure her children were safe, supported, and emotionally held together. Her mission was to get my brothers the help they desperately needed and guide our family toward some sense of stability.

At the time, my mother was completely healthy. She had no chronic conditions and no medical concerns. So when her right hand began to swell and ache, she dismissed it entirely. She blamed stress. She told us it must be from clenching her fists in her sleep, a habit she had developed from the constant tension of trying to keep our family from falling apart. She even convinced herself that she had fractured a finger overnight and began wearing a brace to bed. Like many caregivers, she ignored her pain because acknowledging it would mean diverting attention away from the people who needed her most.

For nearly ten months, the swelling worsened and the pain intensified. She gradually lost movement in her hand, especially her middle finger, and still she delayed seeking care. Only when exhaustion caught up with her, and when the pain became impossible to ignore, did she finally agree to go to urgent care.

That visit changed everything.

An MRI revealed severe swelling but no fracture. A bone specialist suspected arthritis and referred her for bloodwork and a rheumatology consultation. The wait time for the specialist was six months. I will never forget the shift in her expression when the office called the next day and offered an appointment immediately, even though countless patients had been waiting for months. The nurse explained that her bloodwork contained markers consistent with scleroderma. She warned that a diagnosis could take months to confirm but they would like to bring her in to begin the process.

Turns out, it only took one day.

After a three-hour appointment, my mother came home carrying a thick stack of referral paperwork and a diagnosis already confirmed through MRI imaging, ANA results, visual inspection, and extensive blood panels. Her hands were shaking. Her smile was practiced. She insisted everything was fine, placed the paperwork in her desk drawer, and immediately began making dinner, as if pretending it was normal would make it so.

That night, I overheard her speaking softly to my stepfather. Her voice cracked as she explained that further testing was needed to determine whether she had limited or diffuse scleroderma. Diffuse scleroderma could affect the lungs, heart, and other major organs, and carried a high mortality rate. I could not comprehend how swelling in her hand could suddenly represent life or death.

The next morning, I sat at her desk and looked through the stack of referrals. CT scans. Pulmonary function tests. A fluoroscopy esophagram. A cardiac echocardiogram. I searched every term online, desperate to understand what was happening to the woman who had been the foundation of my entire life.

My relationship with my mother is not typical. For ten years, it was just the two of us. She was a single mother from the time I was two years old, and she filled every role without hesitation. She was protector, provider, comfort, and stability. She worked long hours, earned promotion after promotion, and slowly moved us from a basement apartment to better neighborhoods, better schools, and eventually our own home. Each move created new opportunities for my future. When I was identified as gifted and talented in second grade, she made it her mission to ensure I received the best education possible. Those opportunities introduced me to STEM and eventually competitive robotics, where I discovered my passion for physics and engineering. My dream of becoming an aerospace engineer exists because she believed in me before I understood how to believe in myself.

She believed in my future before I knew how to imagine it myself. When I was labeled gifted and talented in second grade, she made it her mission to ensure I would have access to the best education possible. New schools introduced me to STEM, strengthened my love for physics, and eventually led me to competitive robotics, where I found both purpose and community. My dream of becoming an aerospace engineer was born from the foundation she built with sacrifice, consistency, and belief.

Scleroderma reversed the roles our family had always known. For the first time, the woman who had spent her entire life carrying others needed someone to help carry her. I had to learn how to show up with intention and consistency. I learned patience, because some days she simply could not do the things she once did with ease. I learned awareness, because when she struggled, her son who loved her was expected to notice instead of waiting to be asked. I learned how to advocate within a medical system that often moves slowly for people facing rare diseases. Most of all, I learned to support her through the quiet, everyday moments that mattered more than anything else. I carried groceries, opened jars, and loosened the lids on medication bottles when her hands refused to cooperate. I pooled money with my brothers to buy her a towel warmer for Christmas, knowing that the Raynaud’s disease connected to her scleroderma would always make the cold another challenge. I offered to get the mail so she would not have to face the winter air. These small actions became reflections of the much larger ways she has cared for me throughout my entire life.

Months of uncertainty followed. Every test felt like waiting for a verdict. When the results finally confirmed that she had limited scleroderma, the relief was overwhelming. Limited did not mean easy, but it meant hope. It meant time.

Through immunosuppressants, anti-inflammatory medications, and physical therapy, she regained much of the use of her hand. The pain never fully disappeared. Her arm still aches. Cold weather remains an enemy. Winter, once her favorite season, now brings swelling and stiffness that are difficult to watch.

My mother has always loved snow-covered mountains. They represent peace and adventure for her. Scleroderma did not take that love away, but it forced us to adjust. We invested in heated jackets, specialized gloves, and battery-powered hand and foot warmers. These tools may seem small, but they represent something powerful. They are reminders that we are not giving up on joy. We are adapting to protect it.

This experience has shaped the direction of my future in ways I never expected. Watching my mother manage a rare and complex disease taught me that innovation is most meaningful when it serves others. It reinforced my desire to pursue aerospace engineering not only as a career but as an opportunity to solve real problems that improve lives. Engineering is built on curiosity and creativity, but it is also built on empathy. As I helped my mother adapt to pain and physical limitations, I became more determined to use my skills to design solutions that help people overcome challenges. I want to build systems that make life safer, more accessible, and more hopeful. The passion that robotics sparked in me now carries a deeper purpose, rooted in the lesson’s scleroderma has taught our family.

Through this journey, I have come to understand what Scleroderma Warriors truly represents. A warrior is not defined only by a diagnosis. A warrior is defined by the strength created through adversity and by the community that surrounds them. My mother is a warrior, even on days when she does not feel strong. And our family, as advocates and supporters, has learned how to walk beside her with intention and love.

When I learned that your foundation uses the fox as a symbol of the community surrounding scleroderma patients, it resonated with me. The fox represents family, connection, and careful movement forward. It symbolizes wisdom, patience, and learning. That is what scleroderma has taught me. It taught me how to slow down, how to listen, how to advocate, and how to love with deeper awareness.

Scleroderma reshaped my understanding of resilience. It strengthened my commitment to service, compassion, and advocacy. It taught me that strength is often quiet, and that a warrior can be someone who prepares dinner for her family while carrying fear in her shaking hands. I did not choose this journey, but it has shaped who I am becoming. It has changed how I show up for the people I love and deepened my gratitude for my mother’s sacrifices. Because of scleroderma, I see the world with greater empathy. I understand the importance of community. And I know with complete certainty that no warrior fights alone.