I was diagnosed with Lupus Nephritis at the age of 19 on August 2009. Before my diagnosis, I was young, vibrant and always full of energy. One morning I came into work and one of my eyes was swollen. This was one of the first symptoms that emerged from lupus.
After being in and out of the hospital for a month, my diagnosis was made: I had systemic lupus combined with a very rare blood disorder called Evan’s syndrome. The reality of going from healthy to sick didn’t hit me; I wasn’t feeling any emotion. I went from 17 years without taking a pill to now being required to take several pills a day.
I was diagnosed with lupus when I was 19 years old. It was 1997, my second semester of my freshman year of college. Unlike most people who go undiagnosed for years, I was diagnosed right away. "You have a mild case of lupus," the doctor said. "Lupus is a chronic illness. There is no cure for lupus." One of my first thoughts was, "Am I going to die?"
Charla de Lupus (Lupus Chat)® is a unique national program offering people with lupus and their families peer health support and education in both English and Spanish since 1994. This program specifically seeks to reach Latinos/Hispanics and African Americans with lupus and their families.
To empower and enhance the quality of life for people with lupus and in most cases by people with lupus through peers providing culturally relevant education and support – with an emphasis on Spanish-speaking communities.
Living with lupus can be confusing and challenging, especially for a young child. That’s why HSS volunteer Judy Campbell wrote the book, Chita Shares A Secret, to give children diagnosed with lupus the courage to cope and live with this condition, as well as to help them rely on the support of the care team, family and friends.
Now available for free download, LupusMinder was developed at HSS to track medications, daily symptoms and appointments. Visit hss.edu/lupusminder.