Hong Thu Nguyen’s journey with scleroderma began in January 2021 with an unexpected change around her nails. “I remember around that time, the edges of my nails suddenly hardened,” she recalls. “They seemed to be scabbing and falling off.”
Initially, she thought it was due to dehydration, but as months passed, her symptoms grew more alarming. By June, she experienced numbness in her hands while riding her scooter and skin tightness in her legs. “I couldn’t feel the steering wheel,” she says, “Every time I went to the shower, when I would squat, the skin on my thighs was so tight that it felt like it couldn’t stretch.”
Early in 2022, Hong Thu was diagnosed with systemic scleroderma, which had immediate impacts on her mental health. “Scleroderma has turned me into a negative, anxious person,” she says. “The old me was not like this.”
The financial burden of treatment also weighed heavily on her. “I was rushing to make and save money to buy medicine,” she says. “I was also afraid of being a burden to my parents.”
While she has undergone difficulties, Hong Thu has also experienced personal growth in her journey with scleroderma. “I have learned to love myself more,” she says. “I’ve learned to slow down, accept my situation, and have tried to become stronger and more confident.”
These days, Hong Thu is a passionate advocate for research. “Scleroderma is very rare, and very few people know about it,” she says. “Research on scleroderma helps people understand the disease, how to control it, and how to live with it.”
Why does Hong Thu #SayScleroderma? “Many people feel like I am different from before, but I can’t explain to them, since they had no clue about what I was suffering from,” she explains. “I #SayScleroderma to raise awareness so that more people learn about this disease.”
