Mother-Daughter Duo on Same Team Against Lupus
My name is Elizabeth SantaCruz, a proud Berkeley College alumna who graduated in 2005 with a B.B.A. in Accounting. My time at Berkeley helped me transition into a responsible, mature, and independent adult. My training allowed me to become more business oriented and analytical. Upon graduating from college, one tool I was equipped with was time management skills.
Berkeley College not only gave me the skills I need for my job as an Accountant, but also for my newfound role as a caregiver and lupus advocate. Lupus is an autoimmune chronic disease that can affect any part of the body including the skin, joints, and internal organs. Lupus can develop in people of any age. The most common symptoms are extreme fatigue, painful/swollen joints, fever, cognitive problems, butterfly-shaped rash on the cheeks and nose, etc. In February 2016, my then 9-year-old daughter, Miah, was diagnosed with lupus after two years of visiting several doctors who were unable to determine what was wrong or even connect her symptoms.
Currently, there is no known cure for lupus. On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms. And nearly two-thirds of the public knows little or nothing about the disease beyond the name. These facts are my motivation to keep going and do my best to spread awareness in an effort to build my daughter a better world.
In September 2017, the three leading voices in lupus in the United States, the Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance joined forces to host the Lupus Patient-Focused Drug Development (PFDD) Meeting. This groundbreaking initiative culminated in a meeting driven by persons with lupus and their advocates to provide the Food and Drug Administration (FDA) with perspectives from our community on several important issues. This was a milestone event in the lupus community. Twelve panelists were elected from the United States, I was one of them. I cannot express enough how rewarding it was to share my daughter’s story with officials from the FDA and help them understand not only how lupus impacts our lives, but also how the drugs that they approve affect us.
Last year, Miah was invited as a guest speaker at the 2018 Lupus Research Alliance Gala held in New York City. Miah visibly moved the audience, by sharing her own experience with Lupus and how meeting Selena Gomez at the 2017 Lupus Research Alliance Gala impacted her life. For my daughter, and many others with lupus, connecting with someone of that magnitude that could identify with what she went through daily was a solemn yet triumphant moment. It gives them solace in knowing they’re not alone.
Miah attends Franklin Elementary School in Kearny, NJ and since her diagnosis, the school has implemented different types of Lupus awareness initiatives. Every year the lovely school nurses create a Lupus Awareness display to engage and educate students and staff on lupus and its symptoms. Also, during the school year, I organize Lupus Awareness Assemblies and this year it will take place on Friday May 31, 2019. The Red Bulls Street Team will join us during this event. The team puts on a show combining athletic street style with the gracefulness of soccer. It is important for me that the students learn about lupus at an early age in a fun and friendly way. I am often overwhelmed by the amount of support Miah and our family receives from Franklin Elementary. They’ve done such an amazing job that in 2018 they were recognized by U.S. Congressman Albio Sires for their dedication and commitment to spreading lupus awareness and education in the community.
One of the many parts of spreading awareness about lupus is advocacy work. For the last few years the Lupus Research Alliance and PA Fund have invited us to travel to Washington DC for their Advocate for Lupus Research Day. During this time Lupus advocates from all over the country meet with members of Congress to share our personal stories about Lupus and to discuss the importance of funding lupus research and patient support services. I am proud to say that these meetings have resulted in increased congressional spending on lupus research initiatives.
May is Lupus Awareness Month which provides a wonderful opportunity to educate the public on the seriousness of this chronic illness. This year, New Jersey Governor Phil Murphy reviewed and approved my request to designate May as Lupus Awareness Month in the State of New Jersey and presented an official state proclamation. As a Berkeley Alumni, New Jersey resident, and mother of a 12-year old lupus patient, it is an honor when your elected representative sponsors an official proclamation or resolution for Lupus Awareness, because this document would lend official recognition to the important work of educating the public on lupus and its symptoms. On May 7th, I hosted the third annual Lupus Ribbon Ceremony on the front steps of Kearny Town Hall to celebrate the commencement of Lupus Awareness Month. The ceremony ended with Kearny Town Hall being illuminated in purple to honor Lupus Warriors and their families.
In 2016, I became a Director of Outreach and Communication for LupusChat, a healthcare community of patients and caregivers affected in some way by lupus. I also became a co-host of #LupusChat, a discussion series that takes place on Twitter and aims to connect those living with Lupus to educational resources. In May 2019, the members of the LupusChat executive board were invited by the National Institute of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIH-NIAMS) to the 25th Anniversary of Lupus Clinical Research & 4th Annual DC Lupus Consortium to present about and share our work with the research community. This was a great experience and just another way that we work to amplify the patient voice and advocate for lupus research.
I have hope that soon we will have better and new treatments and ultimately a cure for lupus. As a mom, I am passionate about improving lupus awareness in the community. Raising awareness and visibility are essential to creating a culture of understanding and support. I truly believe that we can make a difference as a community and we can impact future generations.
