September 26, 2024
Radiating optimism despite living with lupus for most of her young life, this month’s Community Inspiration,17-year old Miah Andrade, has a powerful message to share during Hispanic Heritage Month: “Too many people don’t know what lupus is or that Hispanics are at greater risk for the disease than those in other groups. And even fewer people know that lupus can affect children.”
Miah’s personal experience well equips her to share her story in hopes of raising awareness among the Hispanic population as well as the general public about the risk and symptoms of lupus. The first-generation American teen is the daughter of Elizabeth SantaCruz who emigrated from Peru and dad Juan Andrade who came to the U.S. from El Salvador. After two years of unexplained symptoms at the age of nine, Miah was told she had lupus –Now she wants other kids and their parents to know what to look for and how to face its diagnosis with a positive attitude.
“If you are too tired to wake up for school, it might not just be because you stayed up late studying. If your joints hurt when you play sports, it might not just be growing pains. Or if you get a really bad rash after playing outdoors, it might not just be because you forgot to put on sunscreen. Tell the doctor because maybe, like me, these symptoms mean you have lupus.”
Miah Fights Against Lupus Disappointments with Determination and Discipline
Miah’s lupus took a toll on her life as a child and teen. Her joints couldn’t withstand the rigors of karate, her favorite activity, forcing her to give it up. Outdoor recess and gym class with her friends were no longer possible because the weather – heat, cold, sunshine, humidity – all can cause her lupus to worsen. When her grades began to plummet due to lupus-associated brain fog, Miah was not going to let the disease take away her identity as an excellent student.
Cognitive therapy helped her relearn how to focus. And while spending hours and hours of her childhood traveling to and from doctors’ appointments, Miah used that time well –doing homework in the car and office waiting rooms. That discipline paid off, graduating middle school with recognition from the President’s Education Awards Program and earning her a stellar 4.5 grade point average as a high school senior. If that’s not enough accomplishments, Miah now also holds down a part-time job at a local pharmacy!
Supported by the LRA Family, Miah Gives Back
Miah grew up what she and her mom Elizabeth SantaCruz describe as the LRA family. “The people at the LRA have always been there for us,” she noted.
Early on, Elizabeth began speaking about lupus for Miah’s classmates at her elementary school, providing information and educational materials so they would understand what living with lupus is like. But when Miah went on to middle school, the mother/daughter duo started giving these talks together.
The two have also traveled with the Lupus Research Alliance to Capitol Hill, providing opportunities for Miah to share her moving story directly with legislators responsible for allocating federal funding for lupus research. Together, they also have advocated for May to be proclaimed Lupus Awareness Month in their state of New Jersey as well as their town of Kearny.
Perhaps their biggest contribution to lupus research, Miah and Elizabeth have been taking part in the Lupus Research Alliance Walk with Us to Cure Lupus events in New Jersey and New York every year since Miah was first diagnosed. Their efforts over the years have raised nearly $10,000 for lupus research. In addition, the two have given many interviews in Spanish with Hispanic media outlets to raise awareness of lupus among this vulnerable population.
Miah’s commitment to lupus advocacy is a source of pride for her mom and dad. To them, giving back to the lupus community exemplifies how she has faced every aspect of having a difficult disease with inspiring grace and courage.
A Positive Attitude Can Help
Elizabeth and her husband found that Miah’s optimistic attitude helped them to deal with their daughter’s diagnosis. “As parents we knew she was very scared. But she fought. The way she handled everything from missing school for medical appointments to giving 14 vials of blood at a time and still getting good grades, made us feel confident that she would not let lupus defeat her.”
Miah would like to share that positive mindset with other young people with lupus.
When she speaks with other kids, she shares: “You got this! I know having lupus can and will be hard. It can be scary to know you have an illness. Don’t push yourself to the limit. But know that symptoms can go away. Get support from your family, friends, and the LRA. You will get through this!”
