The story of Lori

Hi, my name is Lori. At the age of 13 I developed a growth on my scalp resembling a cyst. Smaller growths, or lumps, began to appear around the corners of my nose. 35 years later and still suffering as this disease worsens with age. I suffer from an extremely rare disease called CYLD Cutaneous Syndrome; benign tumour growth on scalp, neck, face, trunk of body, and genitalia. I lost my career about 5 years ago due to the effects and physical deformity of the disease. I was a Registered Nurse. In 2016, due to condition known as “turban tumour”, my scalp was surgically removed and partial thickness skin grafts from thigh grafted onto skull. Prior to scalp removal I had over 50 surgeries on scalp and various other areas of body with tumour growth. In 2019, my forehead was surgically removed, and skin was grafted from abdomen. Grafting was unsuccessful and graft had to be debrided by surgeon weekly until skin was removed. The tumours are now attacking my back, and still growing on scalp. A lot of these tumours ulcerate, so they bleed and become infected often. There is not a lot of information available about this disease but I am hopeful for the future. I also want to bring awareness to this disease as compassion in healthcare community is severely lacking. Thank you for allowing me to share my rare disease.