As many people in the rare, chronic, or underserved disease community know, the journey to diagnosis can be a long and difficult one. For Texas resident Cheryl Yetz, the diagnostic process took a total of 17 years. According to Fox 26 Houston, Cheryl first began displaying concerning health issues in her 20s. In fact, at 28 years old, she had a stroke. Then came the bowel obstructions. It took numerous rounds of testing, over a decade, and the right doctor to finally give Cheryl a diagnosis: lupus. 

After her stroke and bowel obstructions, Cheryl’s health continued to worsen. Her mammary ducts in her breasts began to bleed. Surgery and draining did little to stop the pain, bleeding, or inflammation. Later, Cheryl was diagnosed with serious liver fibrosis (scarring). She had difficulty breathing, joint pain and mobility issues, and hernias that – despite seeking care for – just never seemed to heal properly. 

Cheryl visited doctor after doctor, attempting to get to the root cause. Finally, she visited a rheumatologist – and finally received her diagnosis. After learning that she had lupus, Cheryl was able to get symptomatic treatment. Now, she is committed to helping others learn about the potential symptoms and manifestations of lupus so that they are able to get earlier care.

Outside of lupus advocacy, Cheryl also enjoys gardening and spending time with her dogs. She encourages others who are going through the same ordeal to find an activity or something else that gives them some comfort. 

What is Lupus? 

Lupus is a chronic autoimmune and inflammatory disorder in which the immune system mistakenly attacks the body’s tissues and organs. This condition may affect different parts of the body, such as the skin, kidneys, joints, heart, lungs, and brain. There are four main forms of lupus, according to the Lupus Foundation of America: cutaneous, drug-induced, neonatal, and systemic lupus erythematosus (SLE). In most cases, when people refer to “lupus,” they are referring to the systemic form. Doctors and scientists believe that a mixture of genetic predisposition and environmental triggers cause lupus. Additional risk factors include being female, being between ages 15-45, having a family history of lupus or autoimmune diseases, or being African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander. 

Lupus is a variable disorder; symptoms and severity vary greatly across those affected. Some individuals may have temporary symptoms, or symptoms just during episodes, while others may constantly feel the effects. Symptoms can (but do not always) include:

• Chest pain
• A butterfly-shaped rash in the center of the face (or other rashes)
• Extreme fatigue
• Hair loss
• Fever
• Joint pain
• Raynaud’s phenomenon
• Shortness of breath
• Confusion
• Memory loss
• Headaches
• Skin lesions which worsen with sun exposure
• Heightened risk of infection, cancer, and bone tissue death 
• Increased risk of pregnancy complications 
• Organ damage