be iNFormed about MPNSTs in NF Type 1
NF Midwest has had a very important article written about Malignant Peripheral Nerve Sheath Tumors (or MPNSTs) in Neurofibromatosis Type 1. MPNSTs are cancerous and often aggressive. They develop in plexiform tumors and are believed to occur in approximately one out of ten people with neurofibromatosis type 1.
It is very important that people with NF Type 1 be aware of them and the signs to look for – “especially new pain, worsening of existing pain, and especially pain that wakes one up from sleep”.
Thank you to Dr. Andrea Gross from the National Cancer Institute at the National Institutes of Health for writing this article for the NF community.
NF Midwest develops “Be iNFormed” articles on various complications and subjects with regard to neurofibromatosis. These articles are written specifically for the NF community without a lot of scientific jargon and with the information that we believe the patient and affected families want and need. We are also careful to have them written and endorsed by experts so that they can be shared with other doctors and seen as a respectable source of information. To find other articles go to nfmidwest.org/beinformed or for a more comprehensive list of resources to nfmidwest.org/learn.