10 doctors weighed in:

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!

10 doctors weighed in
Dr. Ed Friedlander
Pathology
3 doctors agree

In brief: 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.

In brief: 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.
Dr. Ed Friedlander
Dr. Ed Friedlander
Thank
1 comment
Dr. Johanna Fricke
Wise words.
Dr. Kenneth Reichert
Neurosurgery
3 doctors agree

In brief: 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.

In brief: 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.
Dr. Kenneth Reichert
Dr. Kenneth Reichert
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Dr. Gerald Mandell
Nuclear Medicine
1 doctor agrees

In brief: 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.

In brief: 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.
Dr. Gerald Mandell
Dr. Gerald Mandell
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Dr. Johanna Fricke
Pediatrics - Developmental & Behavioral
1 doctor agrees

In brief: 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.

In brief: 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.
Dr. Johanna Fricke
Dr. Johanna Fricke
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2 comments
Dr. Johanna Fricke
410-955-3806 is the # for the Johns Hopkins NF Team in Baltimore. 301.496.4948 is the # for the NIH team in Bethesda.
Dr. Johanna Fricke
Don't forget to take care of yourself through therapy, local support groups, talks with clergy- whatever works for you.
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