SAN ANTONIO — February 28th is nationally recognized as Rare Disease Day. Abigail Villarreal, sophomore at Thomas Jefferson High School, wants to get her community involved and promote education surrounding the day.
"It’s not just a day on the calendar and people don’t know about it," she said.
Villarreal organized "Be Rare Spirit Day" at her school where she is encouraging students and staff to show their support by wearing the official colors representing rare diseases deemed by the National Organization of Rare Disorders (NORD).
She will also be passing out zebra print ribbons for people, representing the official animal for NORD.
"I would get bullied for being different and I realized it’s okay to be rare, I’m happy I’m rare," said Villarreal.
She was diagnosed with Phenylketonuria (PKU) as a newborn. The rare disorder causes a certain amino acid to build up, which leads to high levels of protein. Villarreal and others with PKU then have to limit the amount of protein they take daily. If untreated, it can lead to brain damage, seizures, or other disabilities, among other serious health issues. Villarreal said she has a more mild variation of the disorder.
"I’m one of the more lucky ones since I do have hyperphe, I can have meat, but my grams of protein per day is only 40 grams,"
The teen is also working to increase awareness for the Light Up for Rare Campaign. She asked businesses in the San Antonio area if they would light up their buildings with the colors representing rare disease day. When she first started reaching out about a month ago, Villarreal said she had a hard time getting businesses to say yes.
"But then I started getting a lot of yeses and yeses and yeses, so I have a lot of building who decided they would light up for rare," she said.
Villarreal said among those who have confirmed with her include: Smoke Stacks at the Alamo Quarry, Bank of America Plaza - Kinetic Skyline, CHRISTUS Santa Rosa Children's Hospital San Antonio, Frost Tower, Henry B Gonzalez Convention Center, San Antonio Marriot Rivercenter, The Pyramid Building, and University Health System Robert B. Green Campus.
After weeks of outreach, the teen even saw support from Home Depot and Lowes, who helped supply colored light bulbs for Villarreal to pass out to her community.
You can visit RareDiseaseDay.org to learn more.
Ways to get involved:
- Wear pink, green, blue, or purple, which represent Rare Disease Day.
- Light up for rare by switching a light bulb in your home to one of the colors representing Rare Disease Day.
- Spread the word on social media and tag NORD on Facebook, Twitter, and/or Instagram.
- Start a conversation with people in your community about Rare Disease Day.
- Visit the NORD website for more information.