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The list of possible medical problems in NF1 is quite long. Usually, each person has only some of the problems. The severity of any one of these medical problems varies widely between people. It is important to ask the parents about their child's medical issues.


A: No, all factors of NF1 are independent:. Some of the more common complications include:. Not yet. Your teen may:. Around 10 percent of plexiform neurofibromas may become malignant. Contact the Multidisciplinary Neurofibromatosis Program.

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Q: If my child becomes a parent some day, will his children also have NF1? After your child is diagnosed with neurofibromatosis, you may feel overwhelmed with information. Around half of all individuals with NF1 are the first in their family to have the condition. How will it affect my child?

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It can be hard enough to be a teenager without having to deal with a chronic condition like NF1. This is usually when neurofibromas tend to develop, and this can be very upsetting for someone who may be beginning to take a special interest in her appearance. If your child has NF1, she may be eligible to participate in one of our clinical trials. For example, your child may easily learn to read, but have some difficulty when it comes time to interpret what she has read.

Usually, they look like little rubber balls under the skin, or they may protrude from the skin. This affects around 3 to 5 percent of people with NF and appears during the first year of life. Q: Are neurofibromas contagious?

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Q: Are the clinical problems treatable? Young men and young women may have some concerns specific to their gender, and some that they share. If the frequency or nature of the headaches change, you should contact your doctor. Not usually. Some children with NF1 may also have plexiform neurofibromas. Deformation of bone structureincluding: scoliosis curvature of the spine.

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Complications of NF1 vary just as much as the symptoms do. True intellectual disability is rare. NF1 can affect different areas of the body and many of the features are age-dependent. These are a different kind of neurofibroma and generally present at birth, even though they might not be visible until later. A: Not at all.

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No, although it might sometimes look that way. Neurofibromatosis type 1 is a genetic condition that can cause a variety of symptoms, including:.

Please remember that the from genetic tests should always be discussed with your doctor or genetic counselor. When neurofibromatosis is not inherited. Luckily, there has been lots of research into how kids with different kinds of learning disabilities can learn best. A: Unfortunately, NF1 is highly unpredictable. Like all children, kids with NF1 have strengths and weaknesses; and like all children, helping them succeed is just a matter of capitalizing on their strengths and compensating for their weaknesses.

A neurofibroma is a tumor that grows along a nerve in any part of the body.

Information for patients

NF1 is a genetic disorder, meaning that if your child has it, it was already in her genes when she was born. It can be easy to lose track of the questions that occur to you. Q: Should the parents be evaluated for NF1? A: Yes, if the parent is showing s or symptoms of NF1. Q: Will my child be able to have children?

Non-plexiform neurofibromas usually appear during the teenage and adult years.

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A: Definitely — in fact, NF is most often diagnosed clinically, and many patients with NF never undergo genetic testing. In order to be diagnosed with NF1, your child must have at least two of the following symptoms:. A: No. Q: Are there any dietary modifications that might help my child? Plexiform neurofibromas are present at birth, but may not be identified until later. It occurs rarely. This is a thickening of the nerve connecting the eye to the brain that affects around 15 percent of people with NF1.

Malignant changes to plexiform neurofibromas. We monitor these tumors for change in size, consistency or appearance of new symptoms such as pain.

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Q: Will my child be OK? A: Most likely yes. Q: When will I know whether my child has NF1? That said, some parents choose to have the test anyway. Follow-up care will depend on the type and complexity of symptoms, and will be individualized for each person. Lisch nodules small spots on the iris of the eye that do not affect vision.

For NF 1 For NF 2 We understand that you may have a lot of questions when your child is diagnosed with NF1: What is it? Q: Is there a test for NF1? In patients who already have at least two of the typical clinical s, genetic testing can identify the mutation that causes NF1 about 95 percent of the time. Since neurofibromas are wrapped around nerve fibers, they can sometimes be painful if pressure is applied to them. Optic pathway glioma.

Neurofibromatosis | symptoms & causes

Understanding what your child is going through can help you support her during this important time - and help you cope, too. Neurofibromatosis is characterized by tumors that are mostly benign, but in around 10 percent of individuals, the neurofibromas may have malignant cancerous changes. Q: Could I have another child with NF1? A: Yes, because anyone can have with NF1. Q: Is there any way to know whether I will have another child with NF1? A: Prenatal diagnosis is available, although it is not possible to know what symptoms of NF1 may have.

Q: Is it possible to know whether my child has NF1 without doing genetic testing? Up to half of all children with NF1 have some kind of learning disability, which range from mild to severe.

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Most likely yes. In the vast majority of people who show two or more symptoms of NF1 — around 95 percent — genetic testing can identify a mutation. Talk to your genetic counselor for more information and to discuss testing options in more detail. Severe complications are rare.

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A: Yes, there are some other rare conditions. A: Yes, and your child should be cared for by NF1 specialists who are familiar with treating the condition in children. Your doctor or genetic counselor will be happy to discuss all of your options with you. Q: Should my other children be tested for NF1? A: If your other children have any s of NF1, they should be evaluated.

Children with NF1 often experience headaches. But that means that five percent of people with NF1 will not have a mutation that is identifiable by the testing that is currently available. Neurofibromas can be removed, but the surgery may leave a scar, and the neurofibroma may grow back. Plexiform neurofibromas may be large, and they can encircle and interweave with normal tissue, making them extremely hard to remove.

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For Patients. Segmental NF is a form of NF1 in which symptoms are limited to a discreet part of the body.

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If your child is old enough, you might suggest that she write down some questions to ask her health care providers, too. Understandably, both parents and teens want to know when — and how many — neurofibromas will show up, but this is impossible to predict.

Scoliosis affects around 10 percent of individuals with NF1, and may appear in early childhood. What does it mean? What is neurofibromatosis type 1 NF1? What complications are associated with NF1? Some of the more common complications include: Headaches.

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Q: Is it possible to have NF1 and not know it? There has been absolutely no evidence that NF1 is caused by any environmental agents or by anything that the mother did during pregnancy. Q: Is there anything else that can cause these symptoms?

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