FAQ - neurofibromatosis 1
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Does anyone else have or have children with Neurofibromatosis type 1 aka NF1?

My daugher has NF1 and only has the several cafe'o late spots and macrocephaly and family history of it. I would like to talk to others with children or even themselves that have this disorder. She has had her first MRI and shows no internal tumors at this time but they said that the neurofibromas usually dont form until puberty.
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I actually have (NF)2.Whitch of course is more rare.Also I do not have cafe'o late spots or macrocephaly.I actually did not know I had NF until my right side went numb 3 years ago.The 1st sign of NF was when I was 12 and I wasn't able to open my hand,my radial nerve had shut down.I had MRI after MRI but never an MRI of my Brain whitch looking back it baffels me.Now I am 21 and have had 3 brain surgeries.All Succesful except my first I lost hearing in one of my ears yet they took out 3 tumors.(Thats very typical for NF 2 patients) My 2nd surgery was a tumor behind my left eye(9 hour surgery),I kept my vision thankfully)Except my 3-6 nerves were damaged so I can't move my eye).My last was a the biggest surgery I have had...medulla oblongata...that could have cost me talking and walking.It was a miracle tho everything went well because it was by the brain stem wall.I have a really really really good neurosurgeon and he also is a good person.We will have 30 minute conversations about just daily life,he really cares bout me.

I don't mean to scare you,I actually have great news for you.The hardest part of all this was when I was at Texasw Lutheran University and got right side numbness.We did not know why...Even went to hospital and they did not help me at all.Not knowing really was the hard part.

That is why it is really good that you are already getting MRI's.When she hits puberty I recommend that she gets one every 6 months.I think everything will be fine if you monitor it.I will pray for your daughter.
Last about myself,I have been really strong throughout this process,and I only think I will have to deal with a gamaknife surgery for my last tumor left on my other auditory nerve.(right now it is tiny)
Ask me any other questions you have.
Artie
P.S. I descided to answer q's about this to help other NF patients.In fact,I am going to NF golf tournament in SAn Antonio on Monday,helping others in the community will make me feel better also.  (+ info)

does any have Neurofibromatosis Type 1?

I was born Neurofibromatosis Type 1 and I have pain, numbness and pins and needles with it. Does anyone out there have the same illness as me? If so, how are progressing and what are you doing about treatment?
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check this site:

http://www.inspire.com/groups/neurofibromatosis-inc/  (+ 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 TYPE 1 GENE DELETION?

My daughter and husband were recently diagnosed with this and I am devastated. I would feel better if I could get proper info on it and perhaps some people who had the NF1 Gene deletion. Can anyone give me information/insight; support? Dr Greene in Crumlin is very nonchalant about it.
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There is no cure for neurofibromatosis, there are studies trying to find test drugs to slow the tumors down and stop them from growing, but its all still in testing stages. I have NF type 1 and I see an NF doctor about every six month. In fact in a few days, I'll be going in the have my MRI scans down, to see where my tumors are, how much they've grown and how many new ones I have.

I found out I had NF type 1 when I was 15, I'm 25 now. No one in my family has it.  (+ info)

What should be done in case of the Neurofibroma Type 1 tumor (under the skin) becomes very painful?

I have Neurofibromatosis Type 1. One of the tumor under the skin is very painful since last 14-20days. I would like to know what should be done as normal pain-killers do not work.
Please advise.

Thanks.
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Hi,

I would like to suggest you that best solution should be taken through any physician or skin specialist. Pain killers should supress the pain for time being not the problem. And I should also suggest you that never use any pain killer for long duration otherwise other problems should arise as side effects and became the cause of some fatal disease.

take care

raj
lucknow  (+ info)

I have Neurofibromatosis type 1!?

I have Neurofibromatosis type 1 and im kinda embarrased about it, i have birthmarks on my body can anyone else out there help me like does any one else have this condition?,
my dad has it and my sister also has it. i dont want it to get worse i only have 1 tumor and i have alot of birthmarks.
is there any cure of it? im gettin my birthmarks removed. but is it dangerous to get my tumor removed?
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There is no cure for this disease (it is genetic). In the majority of cases the tumors are benign, in a slim minority they can become malignant. The disease, however, can place you at a higher risk to develop cancer at some time. So, in either case a doctor should monitor you closely for an undetermined amount of time. The tumors can be removed if they are disfiguring or growing fast or causing other problems . . but generally the tumors are left alone with a 'watch and see' approach. You can find more information about the disease from the following organizations:

Neurofibromatosis, Inc.
http://www.nfinc.org/

Children's Tumor foundation
http://www.ctf.org/

Cancer.net: NF1
http://www.cancer.net/patient/Cancer+Types/Neurofibromatosis+Type+1  (+ info)

One of my Neurofibroma (type 1) Tumor under the skin has become very painful. What should be done?

I have Neurofibromatosis Type 1. One of the tumor under the skin is very painful since last 14-20days. I would like to know what should be done as normal pain-killers do not work.
Please advise.

Thanks.
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First and foremost, you should go to your doctor or at least contact him/her right away. Something that may not seem like a big deal to you, could be a reason for concern. Any changes in symptoms should always be reported to your doctor, because the slightest of details could change what the dr thinks. As for the pain, I'm sure your dr would also be able to help you with that. He can prescribe a pain pill that will work for you.  (+ 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.
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What the percentage of person who has 6 or more cafe au lait spots gets neurofibromatosis?

If the person has 6 or more cafe au lait spots with 1.5cm, what is the approximate percentage to develop a neurofibrmatosis?
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As stated in the other 2 answers , There is a DNA test for NF1 and NF2 , I myself would go to a genetic specialist or a Neurologists and ask for the testing A NF Dr would be the best place to go , Most of the time Cafe- spots and freckling around the groin area is a first start I know I Had there just after I was born Back in the late 1950's there wasn't much known about NF Not till the late 70's was I able to find any info . if you go to www.ctf.org It is about the best place to start for research . Hope this Helps.
Kim_mepa  (+ info)

What is the percentage of people affected with Neurofibromatosis?

Example: 1 out of 500
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About 1 in 3,000 for NF Type 1.

That works out to 0.03% of the population  (+ info)

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