When she was seventeen, Grace Meihaus noticed that patches of her skin had suddenly become tight and her fingers swelled up and turned blue whenever she was cold. An active teenager who enjoyed playing sports and hiking, Ms. Meihaus suddenly fatigued easily and started losing focus in school. Depression and anxiety soon followed. First misdiagnosed with lupus, it was soon determined that Grace had scleroderma, or systemic sclerosis (SSc).
SSc is a rare autoimmune rheumatic disease that affects the skin and other organs of the body. Primary symptoms include Raynaud’s phenomenon, which is an exaggerated response to cold temperatures, a thickening and tightening of the skin and inflammation and scarring of many body parts, leading to problems in the lungs, kidneys, heart, intestinal system and other areas. Typically a disease of young women, SSc affects upwards of 100,000 people in the United States.
By 2015, Grace’s symptoms worsened and she left college to take care of her SSc. Through a scleroderma support group, she learned about Dr. Richard Burt at the Feinberg School of Medicine at Northwestern University and his experimental scleroderma treatment. Ms. Meihaus soon met with him and several months later received an autologous hematopoietic stem cell transplant. Within months, her skin loosened, her internal inflammation stopped and her immune system improved significantly. Her shortness of breath also vanished completely and she was again able to enjoy sports. Ms. Meihaus, who is now 22 and lives in Santa Rosa, California, with her family, returned to college in the fall of 2015 and intends to pursue a degree in communications media.