Neurofibromatosis Type 2

Question: 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.

Answer: 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?

Question: 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

Answer: 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.

Question: i have type 2 neurofibromatosis. and i think i am pregnant. and i need to know if abortion is safe for me? i need help to know if i should get an abortion or not, because if i go through with pregnancy it could kill me, but if i do go through with it would it be safe for me? what would be my best course of action. plz answer asap i need help to know if i should get an abortion or not, because if i go through with pregnancy it could kill me, but if i do go through with it would it be safe for me? what would be my best course of action. plz answer asap i am very early still. no more than 2 months i know for that fact but whats the best for me i have an iud in but i still got pregnant with it in, i've had it since jan 08...

Answer: It would be best to discuss this with your doctor, parents and father of the child. I';ve never heard of anyone dying from having a baby that had nf. I have heard that you can get more tumors, but nothing about death. And that there is a 50% chance of passing the nf onto you child. I'm pro life, but this is really up to you and something you shouldn't take lightly. Best to talk about it with your doctor and your family. I have nf type one.

Question: 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).

Answer: 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

Question: 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.

Answer: 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?

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

Answer: 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. /\/\/\/\/\/\/\/\/\/\/ But you'll need to speak to your specialist to find out more information.

Question: I Have Neurofibromatosis Type 1.? I have had it since birth. The only other people i know who have it is my mom and 6 other brothers ad sisters. Please some one with this disease answer. I would like 2 relate. I have many problems with this disease. Please let me know what problems u have with yours.

Answer: I do not have NF1, but I tried to find places you can connect with those who do. Best of luck to you. I hope this helps. http://www.nfinc.org/cgi-bin/forumdispla… http://www.nfinc.org/cgi-bin/Ultimate.cg… http://ghr.nlm.nih.gov/condition=neurofi… http://www.asconews.org/patient/Cancer+T… http://www.ninds.nih.gov/disorders/neuro… Looking for a pen pal, have a question, or simply have some NF related information you would like to share? Post it on the NF Network Bulletin Board. Looking for live chat? NF, Inc.-Arizona hosts regular teen and parent chats on their website. For information on scheduled chats, send an email request to nicolehicks@nfaz.org. The NF Network Bulletin Board is an open forum for the NF community at large. Opinions expressed on the Bulletin Board are solely those of the individual authors and do not necessarily reflect the beliefs, recommendations, or positions of NF, Inc. or its members. Enter the NF Network Bulletin Board http://www.nfinc.org/board.shtml http://children.webmd.com/neurofibromato… http://www.ecureme.com/community/ListMsg…

Question: Neurofibromatosis? please help mee? 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 have many complications? please help me.

Answer: There is a 50/50 chance of passing it on.Nobody knows how severe it will be on the child but they wont be deformed.I have 3 kids and 1 who has NF1.So far (she is 15) she has no problems,just the spots no tumors.I have big problems and lots of pain.It has attacked my spine and hip.I chose to have kids and am glad I did.I couldn't emigine life without kids.Its your choice.

Question: Fundraiser ideas for illness...? I have a neurological disorder for which there is currently no cure (Neurofibromatosis, Type 2). Constant research is being done to find a cure and I want to do my part by raising money to help out with this. I am not too sure how I should go about doing this. One of the most effective ways is obviously asking family and friends for donations but I am not a big fan of asking people for money so I would at least like them to get something in return for their support of a good cause. What are some ways I could possibly do this or services I could offer? I am not seeking pity by any means so I want to steer completely clear of that, I just feel like I need to do my part, rather than just sitting back and letting things happen. Any suggestions will be greatly appreciated. Thanks for your time.

Answer: Fund raising is a great idea. I would suggest that you align yourself with an established charity organization. They have the infrastructure and support staff to help with this. In fact, as I have found, they normally already have programs in place that you can participate in to raise money easily and effectively. http://www.ninds.nih.gov/index.htm http://www.ctf.org/ http://www.nfinc.org/ ....hope that helps.

Question: What is the best way to ask local restaurants and businesses for donations for a cause? I am hosting a benefit in a few months to help raise funds for research for a neurological disorder that I have for which there is currently no cure, Neurofibromatosis, Type 2. I plan to have an evening of food and drinks featuring a raffle and auction. I need items for the raffle leading up to one big-ticket item at the end of the evening. I am thinking that I will see if area businesses and restaurants will donate items such as gift cards but I do not know the best way to ask for this, without sounding needy. It really is a good cause so I think a lot of places will be glad to help if I can just come across the right way. Does anyone have experience with this?

Answer: Sounds good. I suggest you go to Health clinics and related stores and shops and organisations. Then try Oxfam and the like. In the mean time advertise what you do, hand out leaflets. or even online using free classifeds to let others know who you are using http://www.sellit-right.com etc.