Medical questions & health advice by board certified doctors
"Is it true that people with NF1 shouldn't have kids?"
My girlfriend of 4 years has NF1 and I have read in some boards online that people with NF1 shouldn't have kids. Is that true? She's in very good health.
This is a question that cannot be answered definitively by any health care professional. This is because it is a very personal decision. Some people with the neurofibromatosis gene choose not to have children and others choose to have children. As you most likely know, neurofibromatosis is a genetic disease which results in the formation of benign tumors known as neurofibromas, central nervous system problems including seizures, skeletal problems, and the cafe au lait spots. There is two important factors (among many others) that will come into play with your decision. First, is the likelihood that you will have children with the gene. For each child that you have, there is a 50% chance that the child will have the NF1 gene. Thus, there is a good chance that at least some of her children will be unaffected. The second factor is the variability of penetrance. This refers to the fact that some people with NF1 have a tougher time than others and it is difficult to predict who someone will do. I suggest that your girlfriend schedule an appointment with her primary care physician or OBGYN. This may be necessary for her to get an appointment with a medical geneticist. This is the type of physician that will be able to discuss in detail the reasonable risks associated with having children so that you can make an informed decision together.
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