A rare disease changed Christhyl Ceriche's life, but technology and inclusion gave her the independence she feared losing. Here is how she turned challenges into empowerment.
Christhyl Ceriche (second from right) and her co-workers during International Women's Day. Photo: Christhyl Ceriche
I was 14 when I first noticed something was different. I was constantly falling, twisting my ankle, and earning the nickname “the clumsy one.” Doctors reassured my parents that nothing was wrong. But as the years passed, my struggles worsened. Walking up the stairs became exhausting, standing up from a seated position required strategy, and my body felt like it was slowly betraying me.
It wasn’t until my early twenties, nine years after my first symptoms and after a series of medical tests—including a muscle biopsy—that I was diagnosed with limb-girdle muscular dystrophy type R2 (LGMDR2), a rare, degenerative, and chronic disease.
At first, I ignored it. I wasn’t ready to let this condition dictate my future. Instead of focusing on my diagnosis, I dropped out of university, started working as a waitress to save money, and applied for jobs. Within a year, I was in Canada with a job contract and my then-boyfriend (now husband) by my side.
For nearly six years, I lived without confronting my disease. I adapted, found ways to compensate for my growing weakness, and pushed forward. But at 30, something shifted. I questioned my purpose and future. Was working in the food industry in Canada truly my dream? The answer was no. I returned to Chile with a new mindset—one of acceptance and action.
I started researching my condition. I found a specialist and, for the first time, I used a cane. I earned a degree in financial management, graduating at the top of my program. I joined Oracle Chile, where I experienced true workplace inclusion for the first time.
At my previous job as an accounting analyst in the logistics industry, despite being hired under Chile’s inclusion law, my experience was far from positive. A colleague repeatedly bullied me, to the point where I often ended up crying in the restroom. The office lacked accessibility—I had to take a long detour around the building just to get inside, as the main entrance was not wheelchair-friendly. I constantly felt excluded and undervalued. At Oracle, everything changed. My colleagues valued me for my skills and contributions, not for my physical abilities.
Oracle’s inclusive practices made a real difference in my experience. Before I joined, my team completed training on creating an inclusive environment for people with disabilities. My manager actively supported my growth, asking about my career goals and how they could help me succeed. The workplace is fully accessible, and I’ve received all necessary accommodations to work comfortably from home, including ergonomic equipment and wireless headsets. When I go to the office, they cover my transportation costs. Most importantly, my colleagues treat me as an equal, valuing my skills rather than focusing on my disability.
I discovered Employee Resource Groups (ERGs) and became actively involved in diversity and inclusion efforts. I joined the disability ERG, started sharing my journey on Instagram, and connected with Dimus Chile, an association for people with muscular dystrophy.
What started as personal healing turned into advocacy. Today, I serve as the global co-chair of Oracle’s disability ERG and as a board member at Dimus. Within the ERG, I collaborate with an incredible team to drive meaningful change across the company. Together, we have organised awareness events on rare diseases, hosted storytelling sessions featuring employees and external speakers with disabilities, and launched initiatives such as free ASL classes for employees.
This year, we introduced RISE (recognising, investing, strengthening, elevating), a professional development program aimed at supporting employees with disabilities in their career growth within Oracle. In Latin America I have also advocated for accessibility improvements to company-provided language courses for employees with visual and hearing disabilities.
Beyond my work at Oracle, I have also been deeply involved in advancing support for people with muscular dystrophy through Dimus Chile. For years, Dimus Chile has been working on building the first national registry of adult patients with muscular dystrophies, a critical resource that does not yet exist in Chile. Last year, we presented a scientific poster on this initiative at the first Chilean congress on rare diseases (CERPOCHI).
Additionally, we have forged partnerships with universities and other entities to provide free online physiotherapy sessions for our members. This year, we finalised two major agreements: one to offer low-cost psychological assistance to our members and their families and caregivers, and another to provide career counselling services for them. I never set out to become an advocate, but it has become my purpose.
Three years ago, I faced another major transition: using a wheelchair. Before the wheelchair, outings with my then-five-year-old son were nearly impossible. Any sudden movement could make me fall, or he could run off, and I wouldn’t be able to reach him. The first time I used the wheelchair alone was with him—we went to a mall, explored stores, and had ice cream. It was a revelation. For the first time, I felt safe, independent, and present in the moment with him. Since then, my wheelchair has become an extension of my autonomy, not a limitation.
However, my condition continues to progress. Recently, I have noticed increasing weakness in my arms, which has been emotionally challenging. Losing arm strength impacts my ability to use my wheelchair, further affecting my independence. This has been harder to accept than the wheelchair itself, but I remind myself that every stage of this disease requires adaptation.
Technology has been a gamechanger. The journey to accessing assistive devices wasn’t straightforward—I had to research options, navigate cost barriers, and advocate for what I needed. My first powered wheelchair was possible thanks to a raffle I organised to raise funds. More recently, I installed an electric door opener in my home after realising that the increasing weakness in my arms was making simple tasks, like opening a door, a challenge.
But assistive technology isn’t just about devices—it’s about designing environments that foster independence. For years, my bedroom had a skylight but no proper window, which meant that I had to rely on my husband to open and close it. When he was at work, I was left in darkness. Through a public assistance program, I was able to fund a renovation, replacing the wall with a real window that I could open myself. I hadn’t realised how much natural light would impact my mood and overall wellbeing. Sometimes, accessibility isn’t just about wheelchairs or ramps—it’s about small but essential changes that allow people with disabilities to live independently.
At Oracle, I’ve had the opportunity to work with the Disability ERG to raise awareness about the importance of accessibility in the workplace. We’ve organised workshops, training sessions, and even a panel discussion with employees with disabilities to share their experiences and insights. Through these initiatives, we’ve been able to educate our colleagues about the benefits of designing for disability, not just for people with disabilities, but for everyone. When we design a website that is accessible to people with visual impairments, for example, we also make it easier to use for people who are using their phones in bright sunlight. When we design a building with ramps and elevators, we also make it easier for parents with strollers and elderly people to get around.
There are still barriers—both physical and attitudinal—but I dream of a world where we no longer have to fight for diversity and inclusion; where accessibility is not an afterthought, but a given. Because when we design for disability, we create a better world for everyone.
The opinions expressed are those of the author and do not necessarily reflect the position of Re:solve Global Health.
Christhyl Ceriche is a disability advocate, financial management professional, and an active voice in the muscular dystrophy community. She lives in Santiago, Chile, with her husband and eight-year-old son.
Comments