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May is Neurofibromatosis month... I have NF

Posted by on May. 2, 2012 at 7:00 PM
  • 33 Replies
2 moms liked this
This is NF Awareness Month. Let's get the word out about this very serious, yet way under talked about disorder!

Neurofibromatosis 1

The most common features of neurofibromatosis are the skin lesions called cafe au lait spots. These are flat, smooth, medium to light brown irregularly shaped spots than can occur anywhere on the skin. Many people have one or two cafe au lait spots, and these are often called birth marks. If a child has six or more cafe au lait spots measuring at least half a centimeter (about a 1/4 of an inch), then he or she should be monitored carefully to see if he or she develops any more signs of neurofibromatosis. A second skin symptom is freckling that appears in places not usually exposed to the sun like the armpit and groin.

After the age of three, many children will develop Lisch nodules in their irises (the colored part of the eye). These can be detected by an ophthalmologist using a special piece of equipment called a slit lamp. These growths do not affect vision.

Another symptom of the disease is the development of neurofibromas, soft fleshy tumors just under the skin. Neurofibromas can also develop deeper in the body. A neurofibroma can be large and have many finger-like projections, called a plexiform neurofibromas.

Most people with neurofibromatosis do not develop neurofibromas until puberty. Because neurofibromas can occur anywhere in the body, there are many possible complications from them. Sometimes these tumors can become malignant (cancerous) or they can affect vital organs. One complication is the development of a tumor, called an optic glioma, along the nerve going to the eye that can lead to blindness, unlike the Lisch nodule. A person can have a neurofibroma without having neurofibromatosis. Many neurofibromas, however, are indicative of neurofibromatosis.

Deformities of the bone are also associated with neurofibromatosis. For example, children can develop curvature of the spine (scoliosis) or an enlargement of a bone in the arms or legs leading to a leg length discrepancy. Other bony defects can be bowed legs and thinning or absence of the bones forming the eye socket. A large head is also sometimes associated with neurofibromatosis.

Approximately half the people with neurofibromatosis have learning disabilities, including attention deficit disorder (ADD), ranging from mild to severe. Learning disabilities are about five times more common in people with neurofibromatosis than in those without the disease.

Neurofibromatosis Type 2

In Neurofibromatosis Type 2, there are not as many physical signs of the disease. People with Neurofibromatosis Type 2 do not have multiple café au lait spots, Lisch nodules, or bony deformities. They may have a few café au lait spots, however. People with Neurofibromatosis Type 2 have a kind of tumor called a neuroma or schwannoma. These tumors affect the nerves that are responsible for hearing and balance. The first sign of the disease is often ringing in the ears (tinnitus), hearing loss, or difficulty with balance when a person is in her teens or twenties. Although only one ear may be affected initally, eventually both ears will be affected in most people. About 90 percent of people with Neurofibromatosis Type 2 will develop these tumors in their lifetimes. These tumors can occur anywhere in the body.

In addition to schwannomas, patients with Neurofibromatosis Type 2 are at risk for other types of tumors, called gliomas and meningiomas, that are found in the brain. These tumors are usually not cancerous in that they are not likely to spread to other parts of the body, but they can cause significant problems depending on where they are located. People with Neurofibromatosis Type 2 are also at risk for a particular kind of cataract that makes vision cloudy or dim.

Please---If YOU or someone you love is affected by Neurofibromatosis, talk about it! The best way you can help, is to spread the word! Knowledge is power


Ask me whatever you are curious about
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by on May. 2, 2012 at 7:00 PM
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Replies (1-10):
Kris_PBG
by Representative on May. 2, 2012 at 7:09 PM
I had not heard of this until my son's friend was suspected to have NF when he was little (he does not have it, however).

When did you learn you had it? Which type do you have?
MommeeTo4
by Smart Mouth McGee on May. 2, 2012 at 7:16 PM
I have NF1

I started getting the tumors at age 17 and was diagnosed then.
I was born with it though.
My mom passed it to me.


Quoting Kris_PBG:

I had not heard of this until my son's friend was suspected to have NF when he was little (he does not have it, however).



When did you learn you had it? Which type do you have?
Posted on CafeMom Mobile
Kris_PBG
by Representative on May. 2, 2012 at 7:19 PM
Quoting MommeeTo4:




Wow - were you panicked with the tumor?

In what ways does it impact your daily life?
bcauseimthemom
by on May. 2, 2012 at 7:23 PM

 My younger sister has both NF 1 and 2. She is 36 years old, in constant pain, a single mom and works full time. She manages her disease and is blessed my niece does not have NF at all. My sister is one of the strongest, bravest women I know.

bcauseimthemom
by on May. 2, 2012 at 7:24 PM

 I hope you have a wonderful medical team and that you are not in a lot of pain.

MommeeTo4
by Smart Mouth McGee on May. 2, 2012 at 7:32 PM
Yes, I have multiple tumors underneath my skin all so far non cancerous.
I've had 2 removed from my lower abdomen, 2 from my upper left arm, and two near my spine, and one on my arm.
They grow back most of the time, so I've stopped getting them removed.

I have many more that have grown and have a softball sized one in my thigh that the docs will not touch because it is too deep into tissues, it could cause me to be unable to walk.

I'm starting to get the smaller tumors on the outside of my skin.

I get leg spasms, migraines, and back problems. If one of my knots(tumors) get bumped , I'm in severe pain.


Quoting Kris_PBG:

Quoting MommeeTo4:






Wow - were you panicked with the tumor?



In what ways does it impact your daily life?
Posted on CafeMom Mobile
MommeeTo4
by Smart Mouth McGee on May. 2, 2012 at 7:33 PM
Much hugs to your sister.

I have 5 kids and so far only one has it.

My current dh and his mom also have it and our dd doesn't show any signs.


Quoting bcauseimthemom:

 My younger sister has both NF 1 and 2. She is 36 years old, in constant pain, a single mom and works full time. She manages her disease and is blessed my niece does not have NF at all. My sister is one of the strongest, bravest women I know.

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Kris_PBG
by Representative on May. 2, 2012 at 7:40 PM
Quoting MommeeTo4:


Hugs momma - I am so sorry. Is there anything that can be done to help you??
MommeeTo4
by Smart Mouth McGee on May. 2, 2012 at 8:14 PM
At the time, for me No, I don't have health insurance. I can't afford any treatments.

My mil and dh also have it, only one of my 5 kids have it. No others show signs

My ds has to see a specialist once a year


Quoting Kris_PBG:

Quoting MommeeTo4:


Hugs momma - I am so sorry. Is there anything that can be done to help you??
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Kris_PBG
by Representative on May. 2, 2012 at 8:16 PM
Quoting MommeeTo4:




That is so sad that you can't get the treatment you need! :(

Does the specialist help your dh a lot?
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