Celebrating my rare disease
Every year, on the last day of February is Rare Disease Day. Now if this new to you, you may be asking,
“What is Rare Disease a day?”
Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
On Rare Disease Day, individuals share their stories, experiences, diagnosis and journey living with a rare disease. Rare Disease Day is a way to promote awareness about the different rare diseases.
For Rare Disease Day 2019, individuals showed awareness by showing their stripes on all platforms available to them.
This year, I showed my stripes for a rare disease called, Stargardt Disease. Stargardt Disease is a loss of central vision over time. Many individuals who suffer from Stargardt will eventually have low vision throughout their lifetime.