Inspired by Diabetes Notes’ "Putting a Face on Diabetes", I wanted to do the same and show how people with genetic disorders – rare or common – manage their condition and live their lives to the full.
I found a feature article about a teenager named Lizzie Tinney, living with Xeroderma Pigmentosa or XP. Lizzie is only 13 years old and yet she already had to undergo surgeries to remove skin cancer sores. Even while wearing protective clothing from head to tow, Lizzie still has to carry around a meter to measure how much UV light she receives.
"It’s …read more