FAQ - neurofibromatosis 2
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What is the difference between neurofibromatosis1 and neurofibromatosis 2?


What causes NF1 and NF2? Are they both caused by genetic disorders and if so, why are there two different names?
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I couldn't believe I saw this on here. My daughter was just diagnosed with this. We have to go back yet for a check up on it. There is also a 3rd one to it. Only they have an actual name for it. I found it on www.neurofibromatosis.com ......I don't know much yet myself but I hope this site may help.  (+ info)

Are there any celebrities with Neurofibromatosis type 1 or 2?


Or any celebrities who fight for the cause through like the March of Dimes and etc ?
I have NF1, and i always wondered if there were any celebrities who have NF1 or 2. And i live in America.
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I have NF1 (Plexiform). Even I would like to know if there any celebrities with Neurofibromatosis type 1 or 2.
I am from Bombay, India. How about you?
Do you also have NF?  (+ info)

Does any one have neurofibromatosis 1 or 2, & how do you deal with it & with how others treat you?


I'v hade it my hole life, and was just wondering how you deal with it. {:-)}
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hi there i have nf as well right now its fairly mild but my dad and grandma and aunt had a pretty sever case you could not tell my dad had it till after he turned 30 ive her dthat hormomes cna offset the disorder and it scares me becuas ei wan to have children eventually but i dont wnat to be cast out like my dad after all my hard work at college( noone public will higher my father becuase of how he looks)
i had alot of touble in elementry school being made fun of it was really hard on me i nevber used to wear bikinis because that is where most of the spots were i had a few removed and now its not so bad but i still feel very uncomfortable sometimes ad i can feel myself eseteem. i just try to keep my head up i know im a good person and some people are to arrogant to look below exteriors most people cant tell i have anything but some ppl who i tell have said i knew there was soething worng with you look at you! and it hurts alot . try not to let it get to you we are beutifull people too:d you can email me if you want i do not know many people with nf and would like to chat just ad my user name as an emil [email protected]  (+ info)

At what age do symptoms of neurofibromatosis start to appear?


I have a friend who thinks that he has this disease and he would like to know when symptoms start to appear. Please answer for both neurofibromatosis type 1 and type 2.
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To diagnosis neurofibromatosis - patients must have 2 or more of these for NF type 1:
6 or more cafe au lait macules larger than 5mm at birth or by age three.
2 or more neurofibromas (usually occurs in adolescence)
2 or more Lisch nodules of the iris.
Axillary and inguinal freckling - arm pit and in the crease of the groin
Distinctive bone lesions


For NF II
1. Masses on the 8th cranial nerve (seen by imaging)
2. First degree relative with NF II and either the mass on the nerve, or 2 of certain tumors. I.e NF II - your parent or sibling must also have it.

Most of the time NF I is diagnosed VERY early on; the child develops the multiple cafe au lait spots and the parents bring them in or the doctor notices the freckling during an exam.

NF is usually diagnosed later (in the teen years). Hearing loss is one of the first symptoms. Again, you would have a family member with it.

However NF is a autosomal dominant disease -- if you don't have parents with this disease than it is INCREDIBLY rare to have a child with it.

Why does your friend think he has it? Does he have any unusually spots or freckling?  (+ info)

Neurofibromatosis 2 - Can it be missed on a CT Scan or MRI?


Basically, I'm wondering if it's possible for a person to have the condition and have a clear MRI / CT Scan.

A 17 year old young lady, with over 14 cafe au lait spots, severe vertigo, constant tinnitus, vision problems and irregular headaches has had all these issues arise within the last three years. The sysmptoms have been becoming increasingly troublesome. No diagnosis has been found.

One of my friends with NF heard and was outraged that the doctors had just shrugged the possibility of the girl having NF. The main reason was that two year old CT scans and an MRI had come back clean and that the cafe au lait spots are rather pale.

Can the tumors be missed on CT Scan? Can they develop after symptoms are observed?

((Unless you find a article directly about this, please no copy/pasting from online... I can do that myself, thank you.))
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I have Neurofibromatosis type I so I know a little about what she is going through. Type II is a little harder to detect. Whereas type I there are tumours that grow on nerve endings. I had one on my optic nerve thus leading to the removal of my eye when I was 3. I have the cafe o lait spots all over my body but have about 80. I have also had the headaches (mine have been for at least the last 12 years)
One question, when she had the MRI and CT did they do a dye contrast with it? If not, it may not have picked anything up. Your friend may also benefit from speaking to a geneticist. If you or your friend want to talk more I'd be more than happy to chat about it. E-mail me on [email protected] and I will get back to you as soon as I can. (Not forgetting that I am in Australia and there may be a time difference)
Hope this helps and have a great day/night!!!
xx  (+ info)

How Do I Cope With Neurofibromatosis Type 2 ? I Was Just As Of Thursday Diagnosed With It. Please Help?


I Need Help With Coping With It I Just Started Showing Signs And Im 23 Now
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That sucks. I'm 23, but I have type 1, I was diagnosed with it when I was 15. I suppose you take one day at a time and hope, that a cure is found for it.  (+ info)

Does anyone know about anything about neurofibromatosis and its effects on pregnancy??


I have NF and my husband and I really want to start a family but are concerned about (1) my health and (2) passing it on to our child. Anyone out there have any advice?! My heart is breaking at the thought of not being able to have a child.
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My grandson has nf1, The Dr. said that there was a 50/50 chance of him passing it on. That was about ten years ago. Now he has three beautiful children. So far they show no signs of this incurable disease.
They could have lesser degrees of it. And it could show up later on.
I wish I could give you the answer you want. But there is no easy answer.
Good luck to you and whatever you decide to do.
-  (+ info)

Neurofibromatosis Type 1 and 2?


I am wondering what the differences between type one and two NF (neurofibromatosis) are. Could someone please explain to me what they are? I would appreciate it. I don't have this disease, but I know someone who does.
The person I know who has this has the brown coffee-colored spots on the body, acts like a six-year-old, and it can cause her to get tumors.
I should also note that with NF, this person responds slower to pain than normal. I don't know what it would do for reflex actions (e.g. put your hand on a hot surface, you pull it away automatically, because you feel the pain).
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Neurofibromatosis type 1 - mutation of neurofibromin chromosome 17q11.2 (Incidence is 1:3500)
* multiple neurofibromas on the skin and under the skin; the subcutaneous lumps are characteristic of the disease and increase in number with age.
* freckling of the groin and the arm pit.
* a predisposition to particular tumors (both benign and malignant). These tumors are called neurofibromas.
* Café au lait spots (pigmented birthmarks). Six or more of these form one of the diagnostic criteria, but are not essential for diagnosis.
* skeletal abnormalities such as scoliosis or bowing of the legs might occur
* Lisch nodules (hamartomas of iris)
* tumor on the optic nerve, also known as an Optic Glioma.

Neurofibromatosis type 2 - mutation of merlin chromosome 22q12. It is a genetic disorder that causes tumors to form on the nerves of the brain and spine (the central nervous system). Incidence is 1:40,000.
* bilateral tumors, acoustic neuromas on the vestibulocochlear nerve
* the hallmark of NF 2 is hearing loss due to acoustic neuromas around the age of twenty
* the tumors may cause:
headache
balance problems, and Vertigo
facial weakness/paralysis
patients with NF2 may also develop other brain tumors, as well as spinal tumors
Deafness and Tinnitus  (+ info)

i have neurofibromatosis but i ain't show if it's type 1 of type 2 does anyone know how 2 find out?


To be given the diagnosis of NF1, an individual must have at least two of the following features. Some people with NF1 have only two, while others can have many of these features:

* Six or more café-au-lait spots over 5 mm in prepuberal patients and over 15 mm after puberty.

* Two or more neurofibromas of any type or one plexiform neurofibroma

* Freckling in axillary or inguinal regions.

* Optic pathway tumour

* Two or more Lisch nodules

* A distinctive osseous lesion such as sphenoid wing dysplasia or thinning of the cortex of the long bones.

*A first-degree relative with NF1 by the above criteria.

* Also, over 50% of patients with NF1 have academic learning disabilities, making early diagnosis of the disease and intervention even more crucial.

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But you'll need to speak to your specialist to find out more information.  (+ info)

i have a disease called neurofibromatosis i have had 2 misscarages im scared i wont continue any pregnancy ?


hey me and my husband have been trying to get pregnant for 3 and a half years i have fallen pregnant twice and with both pregnancys i misscaried at 8 to 9 weeks i have a disease called neurofibromatosis and i am scared i will never have a baby and i dont know how i will cope if i keep losing these babys can anyone give me any advice on how to cope and does anyone no weather this disease coudle have an effect on these pregnancys??? thanks
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There is an amino acid in the blood called homocysteine. In high levels, this acid is very destructive to the body and is linked to miscarriages. There is a MTHFR gene mutations as being a possible factor in recurrent miscarriages. The MTHFR gene can affect how a person's body processes homocysteine. Homocysteine levels should be 6.3umol/L. A sprinkling of baby dust for you both. :)

http://www.rialab.com/miscarriages_prevented.php

http://miscarriage.about.com/od/thrombophiliadisorders/p/homocysteine.htm

http://www.squidoo.com/homocysteine-hcy

http://www.abcvitaminslife.com/Supplements/ProductDetails942.aspx  (+ info)

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