In an interview with STAT, 38-year-old Tiffany Peterson, a patient advocate, detailed her experiences with lupus and how she has worked to connect other patients with the resources they need to improve their management of the disease. Ms. Peterson revealed that at the age of 17, she had joint pain in her wrists and knees, hair loss, and irregular periods. With no family history of lupus, she suspected that arthritis was behind her symptoms and began to self-manage her condition with over-the-counter analgesics. Although the drugs initially eased her pain, her symptoms worsened in college when she ceased taking the analgesics after becoming aware of the potential side effects of long-term use. After experiencing severe pain and fatigue, Ms. Peterson visited a rheumatologist—who diagnosed her with lupus and prescribed her high-dose steroids. However, because of the adverse effects of the steroids and an inability to share in the treatment decision-making process, she switched rheumatologists and started receiving both mycophenolate and hydroxychloroquine to treat her autoimmunity, joint pain, inflammation, and fatigue. In 2012, Ms. Peterson co-founded LupusChat, a biweekly virtual conversation aimed at providing a platform for patients to share their experiences and ask questions among a community of patients, caregivers, and physicians. “I wanted there to be a space where … patients and their caregivers … can come to find community and also have credible health information. There are a lot of people who don’t … have a local lupus organization that they can go to for … support, [a]nd LupusChat sort of fills that void for them,” concluded Ms. Peterson.
Patient Advocate Offers Support and Health Information Through LupusChat Resource
Conexiant
April 30, 2024