Rédaction Africa Links 24 with Isabella Cueto
Published on 2024-04-09 08:30:40
Tiffany Peterson was a 17-year-old high school student when she first started experiencing excruciating pain in her wrists and knees. Despite hearing that teenagers don’t get arthritis, she couldn’t ignore the symptoms, which were accompanied by hair loss and menstrual irregularities. Without health insurance and limited access to online health information, she struggled for years before finally receiving a diagnosis of lupus in college.
Since that diagnosis, Tiffany has become a vocal advocate for lupus patients, founding the bi-weekly virtual conversation platform called LupusChat in 2012. This platform has brought together patients, caregivers, and clinicians from around the world to discuss their shared experiences and provide support and information to each other.
In addition to her advocacy work, Tiffany has also worked as a consultant or advisor for various pharmaceutical companies developing treatments for lupus, including Aurinia Pharmaceuticals. In an interview with STAT, she shared her journey from the early, undiagnosed days to finding treatments that worked for her and the importance of community when dealing with a chronic illness like lupus.
Growing up, Tiffany was a science enthusiast with dreams of becoming a marine biologist. She was actively involved in nerdy after-school clubs and shared her joint pain complaints with friends and family, although they could only correlate it with arthritis. Despite being the oldest of eight children and having a family history of autoimmune diseases, lupus was a puzzling diagnosis for her.
In college, Tiffany struggled to manage her symptoms with over-the-counter pain medications like Aleve. As her symptoms worsened, including severe fatigue and debilitating joint pain, she had to drop out of college and seek a diagnosis. It was during this time that her family realized the severity of her condition and helped her get health insurance to access proper care.
After being diagnosed with lupus, Tiffany’s treatment plan included high-dose steroids to manage her mobility issues. Over the years, she has changed doctors and is currently on medications like mycophenolate and hydroxychloroquine to control her symptoms. Despite the challenges of finding the right doctors who value her input in her care, Tiffany remains committed to managing her condition and living her best life.
The creation of LupusChat was born out of Tiffany’s desire to connect with others who shared her condition and provide a space for them to find community and credible health information. Through this platform, she has been able to educate and support others going through similar experiences, addressing topics like relationships, kidney health, pregnancy, and more.
Tiffany’s journey with lupus has been a challenging one, but she has found purpose and fulfillment in advocating for others and building a supportive community. Through her work with LupusChat and her advocacy efforts, she continues to make a positive impact on the lives of fellow lupus patients and their loved ones.
