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Elkton, MD
A 27-year-old female asked:

How common is it for a person with nf1 to develop tumors? i'm very upset that my daughter has it and very worried. please help!

4 doctor answers10 doctors weighed in
Dr. Johanna Fricke
Pediatrics - Developmental and Behavioral 51 years experience
Www.ctf.org provides: Information & support. Symptoms of nf1 vary greatly depending on location & type of tumors. Evaluation & monitoring by an nf team: pediatric neurologist, ophthalmologist, neuropsychologist, geneticist, & developmental /behavioral pediatrician is ideal. 35-65% have learning disabilities & adhd that require special educational supports, accessed through your school district's child find.
Created for people with ongoing healthcare needs but benefits everyone.
Dr. Johanna Fricke
Pediatrics - Developmental and Behavioral 51 years experience
Provided original answer
410-955-3806 is the # for the Johns Hopkins NF Team in Baltimore. 301.496.4948 is the # for the NIH team in Bethesda.
Feb 21, 2013
Dr. Johanna Fricke
Pediatrics - Developmental and Behavioral 51 years experience
Provided original answer
Don't forget to take care of yourself through therapy, local support groups, talks with clergy- whatever works for you.
Feb 21, 2013
Dr. Kenneth Reichert
Neurosurgery 36 years experience
Neurofibromas : Neurofibromatosis (commonly abbreviated nf; is a genetically-inherited disorder in which the nerve tissue grows tumors (neurofibromas) that may be benign and may cause serious damage by compressing nerves and other tissues. The severity in affected individuals can vary. Approximately half of cases are due to de novo mutations and no other affected family members are seen.
Created for people with ongoing healthcare needs but benefits everyone.
Dr. Gerald Mandell
Nuclear Medicine 53 years experience
Increased risk: Most common tumors are benign neurofibromas. Severity can often be mild. Risk of cancer developing in person with nf1 is about 7%.Benign neurofibroma may turn intocancerous form called sarcoma invades nearby structures and sometimes metastasizes to other regions of the body. These tumors usually develop in adolescents and adults.Also increased risk of leukemia, brain tumors, and breast cancer.
Created for people with ongoing healthcare needs but benefits everyone.
Dr. Ed Friedlander
Pathology 45 years experience
Educate yourself: Most people with NF1 lead basically normal, happy lives. There is an increased risk of a troublesome and less likely of a catastrophic tumor developing, usually in adult life, but this is something that can happen to anyone -- the NF1 tumors are just a distinctive set. It would be a mistake to treat your child differently or as someone who cannot expect a good future. Love your daughter.
Created for people with ongoing healthcare needs but benefits everyone.
Dr. Johanna Fricke
Pediatrics - Developmental and Behavioral 51 years experience
Wise words.
Sep 19, 2014
Last updated Feb 26, 2017

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