What are the medical challenges?
Pigmented moles can be more than skin deep. Challenges include decreased body cooling (fewer functioning sweat glands), and too little fat where the nevus is located. Large nevi can be delicate and tear easily, requiring restricted activity. In a small percentage of cases pigment cells can be found in the brain and spinal cord - a complication of large nevi called neurocutaneous melanocytosis - which can be fatal, but usually is not. People with large nevi have a higher risk of skin cancer. Nevus Outreach is working to identify the exact risk of skin cancer, and is conducting scientific research to find a cure. Since so little is understood about large nevi even by doctors, Nevus Outreach works to educate the medical profession about large nevi.
Just how high is that risk of skin cancer? We're trying to learn that. That and the answers to a bunch of other questions. That's why we started an internet-based registry of people with large nevi - so we could learn the answers. We have collected many times more information than any registry that ever came before Nevus Outreach. Our registry data has taught us some very interesting things. We collect it and share it with top-ranked pigmented nevus specialists for analysis. A number of medical journal articles have been published as a result of our data - leading to a more accurate understanding of large congenital melanocytic nevi.
Wait - Neurocutaneous what?? Neurocutaneous Melanocytosis (NCM) - is when cells that make pigment (melanocytes), like the ones normally found in your skin, are also found in your brain. This is a major deal. Is it common or uncommon? A small percentage of people with large nevi can have problems from NCM. It's important to know about it because the problems can be pretty severe. After you register you can read more about NCM in the Nevus Neighborhood, our members-only section for people with nevi and their family and friends.
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