Feb. 13, 2018

A Young Advocate Making Her Voice Heard

Twenty-year-old Taylor Kassel refuses to allow lupus to dominate her life.

When she started developing symptoms, including the butterfly rash and high fevers, doctors responded by giving her skin creams intended to treat allergic reactions. Soon after, she developed whooping cough, pneumonia and strep throat – all at the same time.

She visited multiple doctors and specialists before her mother finally demanded that doctors conduct tests to figure out the root of her health problems.

Tests confirmed that it was lupus. She then had a kidney biopsy to determine whether or not she needed chemotherapy right away or not at all. Based on the test results, doctors decided to move forward with chemotherapy. Within a week of being diagnosed, Taylor started chemotherapy treatments and began taking prednisone and plaquenil. She was 13-years-old, scared and confused and had never even heard of the disease.

She reached out to the Lupus Foundation of America shortly after her diagnosis to learn more about the disease and gain access to resources to help her cope with lupus.

“When I was diagnosed, me and my family didn’t know much about the disease and we had a hard time adjusting to the new reality, so we reached out to the Foundation to find the guidance we were seeking to help manage lupus,” said Taylor.

The Foundation provided valuable information and support to help Taylor and her family transition to life with lupus, and she recognized through the experience that being a part of the community and giving back by sharing her story were critically important to her.

Soon after, she attended the Foundation’s National Advocacy Summit. Taylor believes that the experience gave her a voice to help support the lupus community. Since then, she has attended several Summits and continues to stay engaged.

“It’s hard for me to see so many people suffering from pain and dealing with the hardships brought on by the disease,” said Taylor. “Being an advocate has given me the opportunity to do something for them.”

Taylor believes that elected officials are influenced by her story, and that her advocacy efforts are helping to raise awareness and encourage support for lupus funding and research.

For Taylor, the Summit also provides her with an opportunity to learn about the latest developments in lupus research and education, as well exchange ideas with other people living with lupus about ways to minimize flares and manage the disease.

“The Summit provides us with hope that progress is being made and more effective lupus treatments are possible,” said Taylor. “I am proud to help Senators and Congressmen understand the devastating impact of the disease by sharing my story.”

This year, the Foundation’s Advocacy Summit will have a special focus on childhood lupus and Taylor believes that it is critically important for children to share their stories as they can have a strong impact on decision makers who can help provide Congressional support for research funding and education and awareness initiatives.

Taylor hopes that more people from across the country will come to the Summit to help build on the successes of lupus advocates that have attended the event in the past.

“We must come together as a community to stand up and make sure that lupus receives the attention that it deserves among the people who can make a difference to lessen the devastating effects of this horrible disease,” said Taylor. “I will never stop fighting – lupus is too often overlooked at the federal level and we need strong voices to represent our community.”

The 2018 National Lupus Advocacy Summit will be held in Washington March 20-21. The two-day event features educational programs on lupus research and drug development, and interactive sessions that will empower attendees to advocate throughout the year. This is an unforgettable experience filled with fun activities and an opportunity to form lifelong friendships.

For more information and to register for the Advocacy Summit, visit the event's landing page.