Lupus Stories

Latoya’s Fight Like a Girl Story (SLE Lupus)

LaToya's Story Lupus

My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time. I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California, my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia. Aside from that, I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it. I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called A Piece of Me. We definitely don't get the recognition that we deserve. I'm hoping that you are able to share this with others in hopes that they will better understand our … [Read more...]

Lisa’s Fight Like a Girl Story (Myasthenia Gravis, Lupus, Cancer)


Hi! My name is Lisa Douthit. I feel like I have been battling disease my whole adult life. I even wrote a book titled Wellness Warrior - Fighting For Life In Fabulous Shoes to talk about some of the lessons I’ve learned along the way and what worked to help me feel better. At 26-years-old, my doctor found a tumor in my heart. During surgery, he found nodes containing Non-Hodgkin's lymphoma. After chemo and radiation, I got thyroid cancer. Treatments were rough, but there was an end in sight, so I fought on and beat cancer (insert high-five here). Then came the autoimmune. It was a terrible disease I couldn't even pronounce. Myasthenia Gravis brought me to my knees, but here is what I learned: WE ARE NEVER A VICTIM TO DISEASE. We may have bad days, really bad days, but they are just moments in time. They pass. Our job is to persevere. To fight. And to never give up. Never ever. Through this experience, I've learned how strong I can be. I've also learned more about compassion, … [Read more...]

Tammy’s Fight Like a Girl Story (Lupus, Fibromyalgia)

Tammy's Story Lupus Fibromyalgia

Growing up, I was very healthy. Then in 2004, I started getting ill and ended up in the hospital. The doctors didn't know what was wrong. In 2007, at the age of 32, I ended up hospitalized because they thought I was having a heart attack. I passed out woke up to my husband panicking, and I realized I was in a hospital room! I was there for almost three weeks. They ran all kinds of tests on my heart and couldn't figure it out. Then, I was hospitalized again because of my kidneys. The doctors were baffled and sent me to a specialist. The doctor took a look at me and said, "I'm gonna run a lot of blood work on you to make sure you have what I think is wrong with you." As my husband and I waited, I was so scared and nervous, but also ready to find out what was going on with me! I used to work 12 hour shifts, 60 hours a week, and now I could barely even get through part-time work. I was exhausted all the time. I was always in extreme pain and very irritable and forgetful! Then, … [Read more...]

Julie’s Fight Like a Girl Story (Lupus, Sjogrens, Raynauds)

Purple Ribbon

I am the 25-year-old mother of a beautiful 2-year-old boy. My symptoms began when I was about 16, and I started losing large amounts of hair. The year after that, I was in and out of the hospital several times because my tonsils would get so enlarged that I couldn't breathe, and I would just feel so sick. I remember that the doctors had talked to me about their concern with some of my blood work, but I ended up getting my tonsils out and getting better. Fast forward to when I was 21. I got pregnant with my son, and my hair started falling out again. I almost lost my son, and was told I only had a 50% chance of him making it through the pregnancy due to a subchorionic hemorrhage. I felt awful throughout my entire pregnancy. Following my son's birth, everything went downhill. I had mastitis five times and had to quit breastfeeding. More and more frequently, I would wake up and feel like I had been hit by a bus. I would always tell my fiance that I was sure someone had beaten me … [Read more...]

Marsha’s Fight Like a Girl Story (Lupus, Heart Disease)

Marsha's Story Lupus Heart Disease

In 2005, I was diagnosed with Brugada Syndrome, a heart disease that causes dysrhythmia. The doctor implanted a defibulator/pacemaker to help control the dysrhythmia. In 2008, I was diagnosed with lupus. Before my diagnoses, I experienced fatigue, joint pain, and pain in my spleen. My sister-in-laws' wedding was coming up in October of 2008. In June, we went to try on shoes for her wedding because I was the maid of honor. My feet were swollen that day, and after I got to the mall, I didn't feel well at all. I went to the emergency room and found out my kidneys weren't functioning correctly, my spleen and liver were enlarged, and I was anemic. I was admitted to the hospital and received several tests. After a week in the hospital, the doctors didn't know what it was, so they sent me to the Ohio State University Medical Center. The doctors at Ohio State eventually found out what was wrong. I spent another two weeks there. A few months after finding out I had Lupus, my husband lost his … [Read more...]