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Conditions

Neurofibromatosis

Neurofibramatosis growths

Type 1 of Neurofibromatosis (Nf1) is also known as von Recklinghausen’s disease or peripheral neurofibromatosis. It is a genetic disorder that affects the nervous system, causing non-cancerous tumours to grow on nerves. This gene mutation can either be inherited or change suddenly, which cannot be predicted. Nf1 affects men, women and all ethnic groups equally.

Symptoms of Nf1 can usually be seen from childhood. Birthmarks can be one indicator, particularly if they are coffee-coloured and more than six have developed by the age of five. Freckles may also be a symptom if they appear in places such as armpits or the groin. Neurofibromas, the non-cancerous tumours, may appear with increased age, sometimes deeper in the body as well as showing on the skin. These can be soft or firm and will often increase in size and number. Although signs of Nf1 are often apparent from an early age, it is not always possible to diagnose the condition until enough symptoms have developed.

Complications can arise from Nf1, although for many people it does not develop beyond being a skin condition. The lumps can, for instance, be in a place on the body where they catch on things, thus causing discomfort. Sight and hearing problems may arise if neurofibromas press on nerves to the eyes and ears, which has been associated with learning difficulties similar to dyslexia or dyspraxia for Nf1 sufferers. Further complications have been known to include high blood pressure, bone problems and increased risk of epilepsy. In extreme cases, the size of the lumps may be disfiguring.

Painkillers may be used to manage discomfort caused by Nf1 and surgery is an option to remove neurofibromas. However, they may grow back at a later date.

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I have small purple marks on my body and they go inwards when I run my fingers over them





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I am 17 years old I ailed for the army a while back and they old ne that NF can cause fits is this true





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Hi I'm 29 also have nf av a tumour on side of my chin and alo arond my chest area. I suffer greatly from lack of confidence because of this. Anyone know can I get them removed





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Please look up information about Dr. Weinberg or Dr. Melmed at this site. https://www.inspire.com/groups/neurofibromatosis-network/

I believe my husband has this disease. He has mostly little bumps everywhere. He doesn't complain of pain but he does have what I would call a nervous twitch. Is this also a result of nf? He has been to his family Dr many tears ago with no results. No one else in his family is similarly afflicted. Is nf definitely genetic?





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Im. ,25 from dallas texas and I have nf1 I have three bumps on my Face and im trying to c where I can get them removed and what is the price.range





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I am 33. I have nf1. I have had lots off issues with my nf from scoliosis to a brain tumor to bowling of my right leg which took twenty two surgeries to correct. I have a 2 year old daughter who so far has no signs of nf. Not even any cafe spots. At what age can i be sure that she does not have nf. Dr. In my area are of no help! Any info would be greatly appreciated. thank you in advance





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I am 25 and me and my mom has. It we were born With it but I also had a 21 year old brother and I have A 10 year old brother they bith dnt get it wuth no sign

I have nf1.with loys of compactions. i have a daughter. She is 2 and so far has zero signs of nf. No cafe spots or anything. When can i be sure she does not have nf.





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I'm 50 and have NF1, it's horrible I've already had over 100 fibromas removed from my head, groin, back,chest and hands, I've still got hundreds more and more are appearing on a regular basis. I've never been able to take my top off during the summer not even in my own garden. It's getting to the stage now where I feel so ugly and disgusting and I know NF1 can be blamed for autism as I have 3 kids with autism, This is my fault and now I've just found out 2 of my grandkids have NF1. My face is becoming disfigured and the lumps are getting everywhere. Is there any chance I could get some help to get some taken away. PLEASE





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know u are not alone I itch all over all the time hate to see myself before a shower

I have nf1 I want to know will I be able to have kids or will it be more difficult. I'm 27





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I have nf1 and fathered 5 kids, my mother also had the condition and had 3 kids so the answer is yes.

I have NF1 it seems I'm growing more lumps and I'm having pain now but I'm not pregnant is it normal ? For them to grow with age the lumps are on my back lower and upper my neck it seems to be growing and getting more lumps





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