Important Health Information about Neurofibromatosis

What is Neurofibromatosis?

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Neurofibromatosis is a genetic disorder of the nervous system. It mainly affects how nerve cells form and grow. It causes tumors to grow on nerves. You can get neurofibromatosis from your parents, or it can happen because of a mutation (change) in your genes. Once you have it, you can pass it along to your children.

There are three types of neurofibromatosis:

Type 1 (NF1) causes skin changes and deformed bones and usually starts at birth.
Type 2 (NF2) causes hearing loss, ringing in the ears and poor balance. It often starts in the teen years.
Schwannomatosis causes intense pain. It is the rarest type.

There is no cure. Treatment is aimed at controlling symptoms. Depending on the type of disease and how bad it is, treatment may include surgery to remove tumors, radiation therapy and medicines.

National Institute of Neurological Disorders and Stroke

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Resolved Question: Healthy weight loss ???? please answer :)? (Mon, 05 Dec 2011 22:26:21 GMT)
Hello first im 18 year old female , i am really overweight., i am 5'8 i weigh 270lbs its mostly in my belly,butt and breast area my legs ant big and bulky as some other women have it i dont know why ??? i have been over weight since i was about 6 or7 yrs old i have sevral health problems i have Neurofibromatosis., (nf1) and i have diabetes,highblood pressure, pcos, and leg weakness., asthma , as too its sometimes hard for me to excersize, i dont have a lot of cash to hire a trainer or a diet
Voting Question: Healthy weight loss ???? please answer :)? (Mon, 05 Dec 2011 22:25:27 GMT)
Hello first im 18 year old female , i am really overweight., i am 5'8 i weigh 270lbs its mostly in my belly,butt and breast area my legs ant big and bulky as some other women have it i dont know why ??? i have been over weight since i was about 6 or7 yrs old i have sevral health problems i have Neurofibromatosis., (nf1) and i have diabetes,highblood pressure, pcos, and leg weakness., asthma , as too its sometimes hard for me to excersize, i dont have a lot of cash to hire a trainer or a diet
Resolved Question: NF1 and Pregnancy - Thinking ahead? (Mon, 26 Sep 2011 06:19:45 GMT)
I have a mild case of neurofibromatosis (NF1) I have had it since birth and only had a few fibromas removed that were stable and not hazardous just annoying to me. I also have an enlarged optic nerve geloma that is stable. I have had this possibly since birth says the Dr. I get yearly MRI scans. Nothing has changed in years with it. So it is safe to say it is not hazzerdous. But my guy and I have discussed pregnancy and having a child But I have read things about NF and pregnancy and
Resolved Question: can i join the army with neurofibromatosis type 1 i haven' had tumor yet and my doctors said im in good health? (Thu, 28 Jul 2011 15:32:24 GMT)
Resolved Question: What type of Health insurance can I get with a preexisting condition? (Sun, 19 Dec 2010 00:52:25 GMT)
I have been diagnosed with Neurofibromatosis type 1 (NF1). I've had chemo therapy treatments a couple years ago and have been told I may need to start treatment again to stop my tumors from growing. All of my tumors are non-cancerous. I have an optic glioma. Even though my tumors are non cancerous, all of the health insurance companies I called said they can't ensure me because of my tumors. Do you know of any health insurance that may be able to accept me? I've already called Blue cross but
Resolved Question: Born with Neurofibromatosis I don't have any money to buy my medications Help? (Sun, 04 Jul 2010 19:43:28 GMT)
was born with (Neurofibromatosis) www.nf.og We don't have heath Insurance any more we had to cancel our Health Insurance Because we could not afford it. It's going on 2 yeaes we don't have Health Insurance. I stop seeing my doctors can't pay for them. Because I have not seen my doctors I can't get my medication But on June 30, 2010 I we to see a NF specialists do to my tumors have been hurtting me a lot and I don't have any medication at all. I have HIGH BLOOD PRESSURE I have not been t
Resolved Question: Born with Neurofibromatosis and can't afford My Medications? (Sat, 03 Jul 2010 21:09:51 GMT)
I was born with (Neurofibromatosis) www.nf.og We don't have heath Insurance any more we had to cancel our Health Insurance Because we could not afford it. It's going on 2 yeaes we don't have Health Insurance. I stop seeing my doctors can't pay for them. Because I have not seen my doctors I can't get my medication But on June 30, 2010 I we to see a NF specialists do to my tumors have been hurtting me a lot and I don't have any medication at all. I have HIGH BLOOD PRESSURE I have not been
Resolved Question: Help Help With My Medication I Can't Afford them at all? (Sat, 03 Jul 2010 20:09:38 GMT)
I was born with (Neurofibromatosis) www.nf.og We don't have heath Insurance any more we had to cancel our Health Insurance Because we could not afford it. It's going on 2 yeaes we don't have Health Insurance. I stop seeing my doctors can't pay for them. Because I have not seen my doctors I can't get my medication But on June 30, 2010 I we to see a NF specialists do to my tumors have been hurtting me a lot and I don't have any medication at all. I have HIGH BLOOD PRESSURE I have not be
Resolved Question: neurofibromatosis type 1? (Sat, 10 Apr 2010 21:58:08 GMT)
im going to join the marines..i have it i know its a "diqualification" WAIVERS.can i get one.info"i can get a letter from my specialist stating IAM IN PERFECT HEALTH, and MRI ...what is my chance
Resolved Question: Can I make an appeal for residency in New Zealand? (Sun, 20 Sep 2009 18:50:23 GMT)
We have a wide circle of family in Christchurch, We've been offered jobs (my mum is on the skills list, as well as my brother and im currenty doing my A-Levels), we can all read etc. Its my mums health that's the only problem. My mum has Neurofibromatosis - she has had 5 minor surgeries, and 3 major surgeries as a result of this. Me and my brother are both healthy We're White British. So, apart from my mums health, we would have got accepted. If we made an appeal to the NZ government, and
Resolved Question: It is a wrong choice to marry an unhealthy women? (Tue, 28 Apr 2009 02:20:38 GMT)
Let's start with this, it all happen I know this women and I fall for her.She live in another country.Last night we talk about her staying with me when we are married.She is uncertain what her life will be in another place.The truth is she is not healthy.Alright she has Neurofibromatosis is a genetically-inherited disease in which nerve tissue grows tumors that may be harmless or may cause serious damage by compressing nerves and other tissues.Here are this link if you want to know more in det
Resolved Question: It is a wrong choice to marry an unhealthy women? (Tue, 28 Apr 2009 02:18:15 GMT)
Let's start with this, it all happen I know this women and I fall for her.She live in another country.Last night we talk about her staying with me when we are married.She is uncertain what her life will be in another place.The truth is she is not healthy.Alright she has Neurofibromatosis is a genetically-inherited disease in which nerve tissue grows tumors that may be harmless or may cause serious damage by compressing nerves and other tissues.Here are this link if you want to know more in det
Resolved Question: It is a wrong choice to marry an unhealthy women? (Tue, 28 Apr 2009 02:12:33 GMT)
Let's start with this, it all happen I know this women and I fall for her.She live in another country.Last night we talk about her staying with me when we are married.She is uncertain what her life will be in another place.The truth is she is not healthy.Alright she has Neurofibromatosis is a genetically-inherited disease in which nerve tissue grows tumors that may be harmless or may cause serious damage by compressing nerves and other tissues.Here are this link if you want to know more in det
Resolved Question: How do I know if I am depressed or if it is just a temporary funk? (long)? (Sun, 15 Feb 2009 17:25:12 GMT)
I have neurofibromatosis. I have had to have two emergency surgeries (and one minor scheduled surgery that was also related to the NF) in the past two and half years because tumors grew and caused major internal bleeding and I almost died both times. I have had doctors tell me they have never seen anything like what happened to me before. These are the experts in my condition. They are not sure why it happened or if it will happen again. I am still dealing with complications from the last
Resolved Question: i have Neurofibromatosis ,need help? (Sat, 20 Dec 2008 16:15:29 GMT)
i have above problem and it is everywhere and it is causing me a problems it is upsetting and worrying ,i need to know how to stop it coming , i have tried all the medicine you can try but they are no help , i cannot even wear a t-shirt cause it's on my arms , please is there any doctors who can advice me how to stop this and get my skin and my health back in order , i 'll be so great full.
Resolved Question: Does phenylalanine consumption (diet drinks) exacerbate tumour growth in people with NF1? (Thu, 06 Nov 2008 08:29:44 GMT)
My sister has asked me to find this out. She has Neurofibromatosis (NF1) and is sure she once heard that phenylalanine is like dynamic lifter for tumours. She has 5 tumours in her brain alone and numerous others on nerve endings throughout her body. All that aside she is a twenty something woman and likes to watch her figure but obviously not compromise her health further. I know diet drinks aren't good for you but I would just like an answer relating specifically to it's impact on tumour grow
Resolved Question: i have Neurofibromatosis type 1? (Thu, 02 Oct 2008 20:49:08 GMT)
im 20 years old and i wanted to join the military but they said its to much of a health rick to allow me to join. i don't understand when i've been healthy all my life with no problems
Resolved Question: Neurofibromatosis? please help mee? (Fri, 28 Mar 2008 12:29:22 GMT)
my bf has Neurofibromatosis and im wondering if it is serious i think he has nf1 because it appears to be very mild he has curvature of the spine and dislexia from it im worried for his health and im worried about having children with him could they become deformed? or live the rest of their lives in pain? i know there is 2 types on Neurofibromatosis and i know for sure he doesnt have the severe one anyone out there have it? or whos partners have it? how did your children turn out ? do they ha
Resolved Question: Does anyone know about anything about neurofibromatosis and its effects on pregnancy?? (Tue, 25 Mar 2008 18:23:03 GMT)
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.
Resolved Question: genetic disorder question (neurofibromatosis)? (Wed, 12 Mar 2008 06:58:47 GMT)
i have the most mild case that you can have of it (Grade 1, or minimal NF, mean the presence of few NF features, with no compromise of health or well being. Perhaps it is most accurate so say that except for café-au-lait spots and iris Lisch nodules , grade 1 is defined by the absence of features, while grade 2 to 4 are predicated on the presence of specific features and an ordered level of compromise.) and no one else in my family has it bad either so i was wondering if that makes it less lik
Resolved Question: If you are a young woman with a cosmetic health problem. . .? (Sat, 08 Mar 2008 07:50:14 GMT)
please contact me. I have Neurofibromatosis. I also have Alopecia, I feel so desperate for someone to understand what I am going through - most girls my age are so concerned with being tan, or are always saying how they are so fat. I just wish I was normal - does anyone out there identify with this? please talk to me. I have a Neurofibromatosis a neurological condition that makes me look very different in some ways - I just really need to talk to somone.
Resolved Question: Does health insurance cover the removal of neurofibromas? (Wed, 01 Aug 2007 20:32:09 GMT)
and is do i have to go to one that speclizes in the disease neurofibromatosis because they are not many nearby or can i just see a general plastic surgeon?
Resolved Question: What are your thoughts about someone who is gay, HIV positive and living with Neurofibromatosis with no family (Sat, 09 Jun 2007 22:55:46 GMT)
I feel very lost right now. I am gay, HIV-Positive and have NF1. I was born with NF1 and had numerous surgeries since I was a child leading to severe disfigurements. In addition to my coming out, my parents eventually disowned me for being gay. I moved to NYC from LA and discovered that I was HIV-positive. That was several years ago. I have since found myself in a deep depression that hinders my ability to form healthy relationships with others who are not only accepting but non-judgemen

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