Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Is this disease always genetic? My sister just had neuro fibroids removed from her skull. She was told after a genetic test that it wasn't but its hard for me to believe this.
This surgery she was hospitalized to take out 9 tumors, the others were too deep to remove. She is just 2 days out from the surgery and says her pain is so relieved that the surgery was a breeze compared to the pain she had been living with.
Her first surgery was mostly surface tumors.
This surgery she was hospitalized to take out 9 tumors, the others were too deep to remove. She is just 2 days out from the surgery and says her pain is so relieved that the surgery was a breeze compared to the pain she had been living with.
Her first surgery was mostly surface tumors.
NF1 is inherited in 50% of the cases, whereas in 50% of the cases it occurs sporadically. If a person has NF1, then he/she has a 50% chance of passing the disorder onto his/her child with each pregnancy.
Was your sister diagnosed with NF1 by a doctor? It is possible to diagnose NF1 if a person has certain signs/symptoms. Also, it is possible to test the NF1 gene to see if there is a harmful mutation. This test will find a mutation in 95% of the people who are diagnosed with NF1. The person with NF1 should be the one to take the test. If a mutation if found, then other at risk relatives, such as siblings and children may be tested for that same mutation. I hope your sister sees a doctor who is very knowledgeable about NF1.
If you want to learn more about NF1, I would recommend Children's Tumor Foundation website.
I hope this helps,
Angelita21
Genetic Counseling Student