Kirsten Anne of Port Moody, British Columbia, is speaking out about her rare genetic condition, neurofibromatosis (NF) Type One, to raise awareness and fight stigma.
Diagnosed at age two, Anne has lived with NF her entire life. The disorder causes non-cancerous tumors to grow uncontrollably on nerves, affecting about 1 in 2,500 Canadians. It can also impact hearing, vision, and increase the risk of scoliosis, bone deformities, and certain cancers.
Now, Anne channels her experiences into art and advocacy. She visits elementary schools with a puppet troupe to teach children about acceptance and empathy. Her ultimate goal is to create an NF puppet show to educate people of all ages in a non-threatening way.
May is Neurofibromatosis Awareness Month, highlighting the need for multidisciplinary care and ongoing research. Dr. Sarah Lapointe notes that trials are underway, offering hope for better management of this condition.