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The term means something completely different within the NF Community. The term is used specifically because it describes that tan color of birthmark seen on people who have NF. Specialists initially used the term as an adjective to describe the type of birthmarks that are NF indicators. So, you would hear people say Café au lait spots. Now the term has evolved from an adjective to simply a noun as in "My child as about 15 cafe au laits around his torso". This word change is very common if someone is familiar to the disorder, it is very strange when someone is not. So, if your child has been diagnosed and the geneticist is talking to you about how many cafe au laits you think you might have, there is a slight awkward pause until he or she realizes that they need to redefine the word in medical terms.
The first time I heard it, I felt the genetic counselor was going to walk in with a tray of hot coffee and milk for all of us to sip while we discussed neurology. That has always stuck with me. So, using David again, as my model, I decided to start my Cafe au lait painting, similar to the signs you see for coffee shops. In his sweater folds, I have cut out the entire section of the NF pamphlet that discusses the need for at least 6 or more cafe au lait spots in order to help confirm the diagnosis.
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