| NEUROFIBROMATOSIS, it's a mouthful, isn't it. Think it is hard to say, try living with it.
Hello my name is Julie Atterbury. I have a medical condition that is called NEUROFIBROMATOSIS TYPE 1(neuro-fibroma-tosis) NF for short. what is NF? You ask. Well there 2 types of NF and both are very serious conditions. This May is National Neurofibromatosis Awreness Month.
Here is a little info.
NEUROFIBROMATOSIS, Type 1 (NF1)
NF1 is also known as von Recklinghausen's disease, after the doctor who first described it in 1882. There are a wide variety of symptoms associated with NF1. Symptoms show up by age 2 in about of the cases. In most cases, symptoms are mild and patients live a normal life. These common symptoms include: Six or more large tan spots on the skin (caf-au-lait marks), which are present at birth, and may increase with age.
Small benign tumors under the skin, called neurofibromas, which usually occur at adolescence and can number from one to hundreds. These may increase during pregnancy or puberty, because of hormonal changes.
Tumors may grow on the optic nerves and in rare cases interfere with vision. These tumors are the single most common sign of NF1 in adults and can exist when no other symptoms are present.
A variety of bone defects may be present at birth.
NF1 is usually diagnosed by a list of diagnostic criteria.
An individual is diagnosed with NF1 is 2 or more of the following are present:
1. Six or more caf-au-lait spots over 5 mm in diameter in pre-pubertal individuals and over 15 mm in post-pubertal individuals.
2. Two or more neurofibromas of any type or one plexiform neurofibroma (a large, diffuse tumor).
3. Freckling in the axillary (armpit) or inguinal (groin) regions.
4. Optic glioma (tumor on the optic nerve).
5. Two or more Lisch nodules in the iris of the eye (clumps of pigment in the colored part of the eye).
6. A distinctive osseous lesion such as phenoid dysplasia or thinning of the long bone cortex with or without pseudoarthritis (in the leg)
7. A 1st degree relative (parent, sibling, or offspring) with NF1 by the above criteria
. NEUROFIBROMATOSIS, Type 2 (NF-2)
NF-2 is a more rare disorder of the nervous system. Common symptoms of NF-2 usually show up around age 19-20 and may include: Hearing loss or ringing in the ears.
Dizziness or balance problems.
Headaches or seizures.
NF-2 is also usually diagnosed by a list of diagnostic criteria.
An individual is diagnosed with NF-2 if the following are present:
1. Bilateral eighth nerve masses seen with appropriate imaging techniques (MRI, CT)
2. A first-degree relative with NF-2 and either:
a. unilateral eighth nerve mass, or
b. two of the following:
1) neurofibroma
2) meningioma
3) glioma
4) schwannoma
5) juvenile posterior subcapsular lenticular opacity
In rare instances, cases of NF occur that are not consistent with NF-1 or NF-2, or have features of both.
Very little is known about these rare conditions.
Some Other General Facts About NEUROFIBROMATOSIS
NF is equally common in males and females and in every racial and ethnic group.
NF1 affects one in 3,000 babies born. NF-2 affects one in 45,000 babies born.
Fifty percent of the people inherit the disease from a parent.
Fifty percent of the people have NO family history of NF and their disease is the result of a spontaneous gene mutation.
For individuals who have NF, there is a fifty percent chance that their child will be born with NF.
At the present time, there is no means of prevention, no effective treatment, and no cure for NEUROFIBROMATOSIS.
http://www.texasnf.org/
http://www.nfinc.org
http://www.ctf.org
http://www.nfauk.org
http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm
http://www.petitiononline.com/2521/petition.html
http://groups.myspace.com/NF (a place where people with NF or people who have loved ones with NF)
Sincerely,
Julie Atterbury
http://www.ctf.org THIS IS THE OFFICIAL SITE FOR NATIONAL NEUROBROMATOSIS AWARENESS MONTH. |
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