Q&A With Dr. Vu Van Quang
A Pioneer in Vietnam: Bringing Hope to Patients with Pachyonychia Congenita
Over the past decade, Dr. Vu Van Quang, MD, PhD, has become a leading specialist for patients with PC in Vietnam. What began as a puzzling case in 2015 of a six-year-old girl with unexplained nail and skin symptoms led Dr. Quang to PC Project, and ultimately to Vietnam’s first genetically confirmed diagnosis of PC. Since then, he has become the country’s leading advocates for people living with PC, helping families find answers through PC Project and connecting them to the global PC community.
In the following Q&A, Dr. Quang reflects on his remarkable journey, the resilience of his patients, and his vision for improving the lives of those affected by PC.
Tell us about your medical practice and how you first became interested in dermatology.
I am a pediatrician, currently serving as Head of the Department of Pediatrics at Green International General Hospital in Hai Phong, Vietnam, and as a Senior Lecturer in the Department of Pediatrics at Hai Phong University of Medicine and Pharmacy. Although my specialty is pediatric allergy and immunology, I have pursued additional training in dermatology for more than 12 years because of its close connection to the conditions I treat.
When did you first encounter a patient with Pachyonychia Congenita, and what led you to connect with PC Project?
I was appointed Head of the Department of Pediatrics at Green International General Hospital in early 2015. That same year, the six-year-old daughter of one of the hospital’s important partners was referred to me because she had suffered from unusual nail, oral, and skin problems since infancy. She had been evaluated and treated at multiple healthcare facilities, yet no definitive diagnosis had been established.
The hospital director told me, “You’ve just returned from your PhD training in Japan—you need to figure out what disease this child has.” To be honest, I was quite puzzled because I had never encountered such a case before.
I carefully reviewed her history, examined her symptoms, and began comparing what I saw with medical literature and online resources. Gradually, one rare condition kept appearing—Pachyonychia Congenita. Fortunately, my search also led me to PC Project. Fortunately, during my search I discovered the PC Project website and reached out for assistance. Mary Schwartz, founder of PC Project, responded with extraordinary generosity, providing clinical consultation and facilitating genetic testing that ultimately confirmed the diagnosis. It was a great honor for me to become the first physician in Vietnam to establish a genetically confirmed diagnosis of PC through keratin gene analysis, with the invaluable support of PC Project.
Approximately how many PC patients have you cared for, and what have you learned from them over the years?
To date, I have cared for approximately 10 patients from 7 different families across Vietnam.
These patients have taught me that PC is much more than a skin and nail disorder. It affects many aspects of daily life, including physical comfort, emotional well-being, education, and social participation. Their resilience, determination, and ability to adapt despite significant challenges have been truly inspiring.
What are the biggest challenges faced by PC patients and families in Vietnam?
Patients and their families often experience difficulties in social interactions, community activities, and school environments. As children grow older, the disease often appears to become more burdensome, affecting their daily activities, mobility, and academic performance.
Despite my efforts to advocate for them, most families have received little support from government agencies or the broader community. In addition, concerns about disease progression, the lack of a definitive cure, and the possibility of passing the condition on to future generations can be emotionally exhausting.
To help address these challenges, I created a support group that brings together families of affected children so they can share experiences and practical caregiving strategies. I have seen how much comfort and encouragement this network provides, and the families have been very grateful for the opportunity to connect with others facing similar challenges.
How has access to genetic testing through PC Project helped you diagnose and care for your patients?
PC Project has been an extraordinary resource for both me and my patients in Vietnam. Mary Schwartz, current CEO Janice Schwartz, Holly Evans, and many other experts within the PC Project community have provided invaluable support. They assisted with clinical case screening, supplied saliva collection kits, and facilitated free genetic testing for Vietnamese patients.
Can you share a memorable patient story that illustrates the impact of diagnosis, treatment, or support?
The most memorable case is the very first patient for whom I arranged genetic testing through PC Project.
She was six years old at the time and had already experienced numerous complications and side effects resulting from previous misdiagnoses and inappropriate treatments. Once the diagnosis of PC was genetically confirmed, her family’s anxiety decreased significantly. They became more confident in the management plan and closely followed recommendations regarding nail and skin care.
Today, she is sixteen years old. She has learned how to manage her condition independently and is able to participate successfully in school, daily activities, and community life with relatively few limitations. Seeing her growth and resilience over the years has been incredibly rewarding.
What has participating in PC Project’s international research meetings and global network meant to you and your patients?
Participation in PC Project has helped me fulfill a personal mission: ensuring that children with PC in Vietnam are recognized and accurately diagnosed rather than overlooked.
Through PC Project, I was also fortunate to attend three international meetings in Arizona in 2016, Chicago in 2019 and Tokyo in 2023. These experiences allowed me to learn from world-leading experts, stay updated on advances in PC research and patient care, and bring that knowledge back to benefit my patients in Vietnam.
Meeting and learning from international experts has strengthened my motivation and commitment to supporting patients and their families. For the families, knowing that their physician is connected to a global network of specialists provides reassurance and hope. Whenever I attend PC meetings, they are always eager to hear updates and are genuinely encouraged by the knowledge that people around the world are working to improve the lives of individuals with PC.
Many families have expressed deep gratitude to both PC Project and our local medical team for the selfless support they have received over the years.
What gives you hope for the future of PC research, treatment, and patient care?
I am hopeful that continued advances in research will lead to better diagnostic tools, more effective treatments, and improved standards of care for individuals living with PC.
I would especially like to see greater international collaboration so that patients in resource-limited countries, including Vietnam, can benefit from the latest scientific discoveries and clinical innovations. My greatest hope is that every child with PC—whether in Vietnam or anywhere else in the world—can receive an early diagnosis, effective care, and the opportunity to live a full and active life.
