NF has 3 different types. NF1, which is the most common type and the type that my family has and it is what I will post about. There are also NF2 and Schwannomatosis.
NF is a genetic disorder that causes tumors to form on nerve tissues. I didn't start to develop these tumors until adolescence. Some people develop them earlier in life, others may never have the tumors. The tumors can show up anywhere on your nervous system (which includes the brain, spinal cord and nerves). Most of the time these tumors are benign but sometimes they can become malignant. I mainly have them on my stomach, chest and back. Some people have only a few, others may be covered by them. I am very self-conscious about mine.
I was diagnosed at birth with the NF. The doctors knew I had it because I at least 6 of the the cafe au lait spots (birth marks that look like coffee spills). I first noticed Josiah cafe au lait spots when he was 4 months old and he was diagnosed shortly after he turned 1. NF1 always shows up during childhood (before the age of 10). It is hereditary, but only if one of the parents have it and than it is a 50% chance. Although someone may get it from a spontaneous mutation. Smiles is the only one out my 3 here on earth children that have it.
Now I am not sure if any of our cancers were necessary linked to NF but everyone in my immediate family who has NF with the exception of Josiah, has had some kind of cancer.
We decided to have Smiles seen at Cincinnati Children's Hospital because they have a research clinic just for NF. We love Columbus Children's hospital and our children has received excellent care there for various surgeries. (including Smile's kidney surgeries). So even though Columbus is closer we wanted to go to a hospital with the newest research. They also are willing to follow me, which is great! I have not been seen for my NF since I was a child and had regular MRI's.
NF is a genetic disorder that causes tumors to form on nerve tissues. I didn't start to develop these tumors until adolescence. Some people develop them earlier in life, others may never have the tumors. The tumors can show up anywhere on your nervous system (which includes the brain, spinal cord and nerves). Most of the time these tumors are benign but sometimes they can become malignant. I mainly have them on my stomach, chest and back. Some people have only a few, others may be covered by them. I am very self-conscious about mine.
I was diagnosed at birth with the NF. The doctors knew I had it because I at least 6 of the the cafe au lait spots (birth marks that look like coffee spills). I first noticed Josiah cafe au lait spots when he was 4 months old and he was diagnosed shortly after he turned 1. NF1 always shows up during childhood (before the age of 10). It is hereditary, but only if one of the parents have it and than it is a 50% chance. Although someone may get it from a spontaneous mutation. Smiles is the only one out my 3 here on earth children that have it.
What causes it?The NF1 gene is located on Chromosome 17. That gene normally produces a protein called neurofibromin that helps regulate cell growth. With NF the mutated gene caused a loss of that protein which allows the cells to grow uncontrolled.
- Neurological problems. Learning and thinking difficulties are the most common neurological problem. Some of the uncommon complications include epilepsy and buildup of excess fluid in the brain.
- Concerns with appearance. Visible signs of neurofibromatosis — such as extensive cafe au lait spots, numerous neurofibromas in the facial area or large neurofibromas — can cause anxiety and emotional distress, even if they're not medically serious.
- Skeletal problems. Some children have abnormally formed bones, which can result in bowing of legs and fractures that sometimes don't heal. NF1 can cause curvature of the spine (scoliosis) that may need bracing or surgery. NF1 is also associated with decreased bone mineral density, which increases your risk of weak bones (osteoporosis).
- Vision problems. Occasionally in children, an optic glioma can develop, affecting vision.
- Cancer. An estimated 3 to 5 percent of people with NF1 develop cancerous tumors. These usually arise from neurofibromas under the skin or from plexiform neurofibromas. People with NF1 also have a higher risk of other forms of cancer, such as breast cancer, leukemia, brain tumors and some types of soft tissue cancer.
Now I am not sure if any of our cancers were necessary linked to NF but everyone in my immediate family who has NF with the exception of Josiah, has had some kind of cancer.
We decided to have Smiles seen at Cincinnati Children's Hospital because they have a research clinic just for NF. We love Columbus Children's hospital and our children has received excellent care there for various surgeries. (including Smile's kidney surgeries). So even though Columbus is closer we wanted to go to a hospital with the newest research. They also are willing to follow me, which is great! I have not been seen for my NF since I was a child and had regular MRI's.
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