Lupus affects 1.5 million Americans which is more than MS, cystic fibrosis, sickle cell anemia, and cerebral palsy combined! 90% of those with lupus are women. Lupus causes inflammation which can affect many different body systems, including your joints, skin, kidneys, blood cells, brain, heart and lungs. Unfortunately there is no known cure for lupus.
I am Heather Kapp and I live here in Syracuse. I am 43 years old and was diagnosed with the disease in September 1995 after giving birth to my first child. Often the onset or first major flare-up is caused by a major stress on the body. During my pregnancy I began showing symptoms like protein in my urine and a butterfly rash across my face, but the symptoms were just attributed to pregnancy. However, the symptoms didn’t end after the pregnancy and immediately after giving birth I began having more symptoms. My blood work was off, I had a huge loss of appetite, hair loss, swelling and joint pain. I thought I was going crazy. Within one month I was diagnosed with Systemic Lupus Erythematosus with Nephritis. I was lucky to be diagnosed this quickly because it often takes 3-5 years with visits to many different specialists before a lupus diagnosis is reached. I was relieved to have a diagnosis and thought, okay give me a pill and I’ll get better . . . not so, there is no known cure for Lupus!
In October 1995 I became ill with flu symptoms, it progressed to pneumonia and then eventually acute respiratory distress syndrome. I was life-flighted from Logan to Salt Lake City. There I underwent exploratory surgery and was put into a medically induced coma. Doctors were not optimistic, my prognosis was grave. Miraculously I lived through that experience and I have traveled a long road of physical therapy, chemotherapy, and then years of juggling medications to try to find something that would control my pain from arthritis, sun sensitivity, rashes, headaches, kidney disease, depression, fatigue and more.
I made a decision long ago that I was not going to let this disease rule my life. My husband Derek and my two daughters Mikayla and Lauren are a huge support. I know my limitations. I have to say no and take care of myself and that’s all right.