
The Author's Disease
- Whole-exome next-generation sequencing analysis confirmed "Usher syndrome".
- Congenital mild hearing impairment in both ears, wearing hearing aids since kindergarten.
- Long-term ophthalmology follow-up for Retinitis Pigmentosa, narrow field of vision, and night blindness.
Current Functional Status
- Mild hearing impairment in both ears; the range of loss leans toward mid-to-high frequencies. Wearing hearing aids, no cochlear implants.
- General face-to-face communication can proceed normally.
- In multi-person gatherings, outdoors, open-space meetings, or noisy environments, important communication information is easily missed.
- Due to Retinitis Pigmentosa in both eyes, the visual field is only about 30 degrees, with obvious night blindness, photophobia, and poor dark adaptation ability.
- When walking in normal environments, it's easy to kick into low obstacles (wheel stops, flower pots, cleaning signs).
- In environments with many people walking around, it's easy to bump into others.
- Must wear sunglasses on sunny days.
- Cannot stare at white-background computer and 3C product screens for long periods; must switch to dark backgrounds or high-contrast modes.
- Takes some time to get used to the environmental brightness when walking indoors from outdoors.
- Nighttime movement is restricted; unable to walk into dimly lit environments without streetlights.
- Must rely on external transportation on rainy nights; driving oneself is too dangerous.
- Overall Condition
- Little motivation to participate in dinners, socializing, or other outdoor activities, especially at night.
- Basically have no chance of attending large events like lantern festivals and concerts.
- When interacting with unfamiliar outsiders, I am often cautious and may be overly nervous.
- Social Certification:
- Hold a disability certificate, classified as severe due to multiple disabilities (visual and auditory).
- Received cane training from the Barrier-Free Home.
- Underwent disability assessment and can apply to the Social Affairs Bureau for an essential companion when going out.

Related Articles
- Self-Diagnosing Usher's Syndrome - An Emotional Journey
- 2016 Retinitis Pigmentosa Conference Notes
- 2019/7/6 NHRI National Sequencing Rare Disease Research Project Press Conference Speech
- 2019 Reflection and Outlook
- Transcript of the Opening Remarks for the First Member Representative Assembly of the Taiwan Usher Syndrome and Deafblind Association
- A New Start After the PhD Qualifying Exam
- Review on 2023 and New Hope for 2024
Resume
- 2011-2018 Studied at National Cheng Kung University (NCKU) Department of Medicine (admitted through the Advanced Subjects Test, not through special channels for people with disabilities, which the medical department does not provide anyway).
- 2014 Discovered severe visual field narrowing while practicing physical examinations as a medical student.
- 2017 Confirmed as having "Usher syndrome" through whole-exome sequencing analysis via a research project by Professor Ching Yung-Hao of Tzu Chi University.
- 2019 Qualified for admission to the PhD program at NCKU Institute of Medical Informatics.
- 2019 Obtained general medical practitioner qualification.
- 2019-2020 PGY Undifferentiated Resident Training (Internal Medicine Group) at NCKU Hospital.
- 2020-2022 Radiation Oncology Resident Training at NCKU Hospital.
- 2022/7 Due to personal reasons, unable to continue fulfilling clinical duties, temporarily giving up the path of specialist medical training.
- 2023 Employed by Forever Young Clinic.
- 2023 Co-founded the Taiwan Usher Syndrome and Deafblind Association in collaboration with Professor Ching Yung-Hao and other patients.
- 2024 Qualified as a PhD candidate in the Department of Computer Science and Information Engineering.
Taiwan Usher Syndrome and Deafblind Association
[Taiwan Usher Syndrome and Deafblind Association | A Patient Support Group for Usher Syndrome and Deafblind Individuals
A patient support group for Usher syndrome and deafblind individuals.
Taiwan Usher Syndrome and Deafblind Association | A Patient Support Group for Usher Syndrome and Deafblind IndividualsTaiwan Usher Syndrome and Deafblind Association
TIPWe welcome more people with NGO management experience to help out~ and also welcome more patients to join.
IT Skills and Experience Outside of Medicine
- Basic Web Development
- Static Site Generator (Hugo)
- Wordpress Management
- Node.js + MongoDB Application Project
- Linux Server Management
- VPS Deployment
- Arch Linux Installation
- Proxmox VE Management
- docker Deployment
- My HomeLab Planning
- Data Processing in Python
- Web Crawler
- Pandas Manipulation
- Unstructured Data Processing
- OCR Model Deploy for Imagetotext transformation
- LLM Research and Development
- Private and Open Source Model Deployment
- RAG Workflow and Technique
- Chatbot Construction
- Agent Design
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