Conditions
Neurofibromatosis
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.
Comments and Questions
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I was 19 when I started getting bumps. I'm now 38 and have quite a few. I'm very conciouis of these but feel happy apart from the ones which I cannot hide from view. i would like to get as many removed as possible. Any ideas.......
I have nf1 and i done lots of reaserch and since i changed my contraceotive it seems my lums have slowed down inn growth. (i maily changed it as can get high blood pressure with nf1 and on the pill. I have had four removed and about to have two more removed. but unfoturnatly one lump has cause a major dent in my leg and no one wants to help me improve the look of it or help when i get pain in my leg.
I am 40yrs old and have just noticed 2 cafe au lait patches, one on my hand and one on my arm......I only noticed these this past weekend...at first thought my hand was stained with baby food (I have 4 kids)or a tea-bag! Haven't been to my GP yet but been looking on internet for what this could be and all sites I've looked at point to NF although most seem to say you're usually born with it or develop it in your twenties. A bit confused as this has definitely only just occured and I am 40. Fortunately I don't have any lumps. Anyone know if this can just occue later in life?
I am 29 and have NF1, which subsequently has caused me to have epilepsy (due to a lesion on my brain). Since being referred by my doctor I have had 15 neurofibromas removed from my body including from my head, limbs and trunk. It is worth talking to yur GP regarding your options for removal. I am under the National Hospital for Neurology and Neurosurgery in London and also for the surgery the Royal Free Hospital. The surgery for small neurofibromas is usually done under local anesthetic.
I suffer from NF1 & NF2 as well i am married but got no children can this conditions kill you Ann on Teeside
im 17 and have NF1. i have tumours on my spine, brain, chest.. and lumps all over my body and the cafe au lait patches. its diccicult lifing with nf1 but when there are people there to serport you u get through it!!! god bless to all those who are fighting against NF X
I'm 19 years old and a year ago bumps started appearing on my skin, though i only have a few and i'm luckier than the people on my mother's sid eof the family; it still stops me and i'm terrified that it will get worse.
I only had two or three fibromas then I got pregnant and they popped up everywhere! I have three children and one has it as well and she had a glioma in her optical nerve. I feel lucky because I have no other problems other than they are ugly. :(
I was 19 when I started getting bumps. I'm now 38 and have quite a few. I'm very conciouis of these but feel happy apart from the ones which I cannot hide from view. Oi would like to get removed .hope all goes ok
I started out with very few bumps. That is until I got pregnant. I have 3 children and each time I got more bumps, mainly on the trunk area. I also have some on my scalp. But it was worth it, I have 3 beautiful children and actually want at least one more.
My 4 year old has Autism and my 2 year old has/is showing signs of developmental delays. He had bloods taken about 4 weeks ago and the paediatrician said it was to check for any genetic disorders. He has some light brown "birth marks" and lumpy skin (small bumps under the skin), he also has a protruding chest bone, wide rib cage and an abnormally sized and shaped head. After seeing this programme last night I read up about NF and I wonder if this is what they might test his blood for. The Dr also commented about his eyes but I didn't really understand what she meant. I have a lot of questions for the Doctors now. Does anyone else have young children who have symptoms that could give me some info/advice please?
You can't test for this with bloods. If your child has more than 5 birthmarks bigger than a 50p then that is what tghe first sign is then later on freckles around armpits and groin area.
I have NF, and they are symptoms of Neurofibromatosis. My advice is that you get all the help you need and go to a neurological specialist who will give u all the info u need. im 17 myself & know lots about nf
I'm 28 i have type 1 and type 2 but very mildly, for now at least. i dont know how i would cope if it got much worse. i consider myself very lucky really in comparison to some cases i have seen. If you Dr is not taking you seriously then change Dr and make sure they know why you dont want to see them and keep changing until you find one who will listen to you! thats what i did and i have been very since, ive had a number of small ops and have plans for more in the future. Some private clinics may also offer you treatment, although its expensive but some offer finance options. it may seem a little off subject but also hypnotherapy for confidence boosting works wonders. dont feel alone on this.
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