Helping Your NF1 Child: A Parents’ Guide To Neurofibromatosis (NF1)

What is neurofibromatosis? Once your child has been diagnosed, what can you expect? Dr. Maloney walks you through how NF1 acts in the body, giving you guidance about possible treatments as you go. 

Parents getting a new diagnosis of NF1 hope to find set, confirmed medical answers. What NF1 offers instead is an incredibly varied future. In some patients, NF1 is hardly more than a few birthmarks. In other patients, it can bring a deadly future of cancerous growths. The diagnosis of NF1 is just the beginning of a lifelong battle with deficiencies, rapid inflammation, and learning issues. Yet Dr. Maloney is convinced that NF1 is not so much a disease as evolution in action.  

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Dr. Maloney walks parents through NF1 using simple examples that show how parents can affect the outcomes of this changeable illness.  

Want to know more? Here are my rough drafts, complete with enough research links to satisfy anyone. These aren’t for the faint-of-heart, and make terrible reading. But they do have tons of information on neurofibromatosis

Neurofibromatosis: General Questions and Timeline of Its Discovery

Neurofibromatosis: First very, very rough draft complete with research links. More on headaches, cancer, and other issues that got left out of the final book. But mostly cut-and-paste medical abstracts, so you have been warned.

Neurofibromatosis: Physical Issues Research.