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One in Three-Thousand: Neurofiibromatosis

Updated on November 26, 2018

NF what?

You may have never heard of neurofibromatosis -just call it NF for short. There are three major forms of this genetic condition, NF1, NF2 and schwannomatosis. The most common is NF1 which affects one in every three thousand births. The total number of people affected by this condition is more than 2 million worldwide, which according to the Children's Tumor Foundation, makes it more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease, combined. With this article I hope to let some of you out there become familiar with this common condition. For those who eventually encounter someone with the disease, and I'm pretty certain you will, I hope to dispel some myths about this condition. For those of you who know someone with it (including yourselves) I hope to share with others some of the things you may have thought or experienced.

Although there are three types of NF which are associated with the condition, NF1 will be the main topic of this string.

What is it exactly?

If Nf is so common, and there are millions of people who experience this condition, how come the name is unfamiliar?

While it is true that NF is more common than some other well known medical conditions such as Muscular Dystrophy, many of the people who have it are shamed and embarrassed. There are stories of bullying, being called ugly, and feelings of alienation which are readily discussed by persons who grew up with this condition on many online forums. Many physicians have considered NF to be a cosmetic condition rather than a serious neurological disorder - which it definitely is. While fibromas - this will be discussed in a future paragraph - are one of the many results NF patients experience, there are other situations such as psychological problems, learning disabilities, physical pain and the potential for cancer which are realities suffered by those who have NF.

NF is a genetic condition that is usually passed down from parent to child. A child with an NF parent has a 50-50 chance of getting the condition themselves. I won't go into the mathematics behind the genetics, but this should make sense to anyone who has taken a science class in high school. Occasionally however, a phenomena called a spontaneous mutation occurs which results in an NF gene. The chart below will provide a visual on how this dominant gene is passed down through the generations.

Images of NF

An image of the cafe au lait spot - so named for its resemblance to coffee with milk
An image of the cafe au lait spot - so named for its resemblance to coffee with milk | Source

Well....what does it Look Like???

Well, I knew this question was going to be asked since so many people in our media driven, information savvy, techno talking, society seem to be so fascinated with the physical appearance of things. And besides that, it's just plain nice to know. You know what I mean?

There will be some pictures that will show you some images of NF patients, however I think it is important to stress that this condition has symptoms that are more than physical. As mentioned earlier, there are psychological experiences, learning disabilities, feelings of alienation, as well as a plethora of other ailments which come along with having the common attributes of this malady.
Some of these, are as follows (according to the National Institute of Health's page):

To diagnose NF1, a doctor looks for two or more of the following:

  • six or more light brown spots on the skin (often called “café-au-lait” spots), measuring more than 5 millimeters in diameter in children or more than 15 millimeters across in adolescents and adults;
  • two or more neurofibromas, or one plexiform neurofibroma (a neurofibroma that involves many nerves);
  • freckling in the area of the armpit or the groin;
  • two or more growths on the iris of the eye (known as Lisch nodules or iris hamartomas);
  • a tumor on the optic nerve (called an optic nerve glioma)
  • abnormal development of the spine (scoliosis), the temple (sphenoid) bone of the skull, or the tibia (one of the long bones of the shin);
  • a parent, sibling, or child with NF1.

Basically, in short, most patients will develop cafe au lait spots - birthmarks on their body - during their youth. From what you can see above, there generally needs to be six or more. Eventually small fibromas grow - these are usually little bumps - on various parts of the body. Depending upon the severity of the condition, there may be a few or there may be many. Some may be small and hard while others may be large and soft to the touch. Most of these are benign, however there is a chance that some may develop into a cancer. Many of the small tumors will grow on nerve endings, or major organs and require surgery, while others may cause bone displacement and disfigurement leading to further medical problems. It is not a pleasant condition to experience physically and emotionally. Even though there is a percentage some will officially become cancerous- the destructive nature of the condition seems almost cancer like. Often the progressive nature of the tumors begins in early adulthood and continues throughout the patient's life.

More images of NF

Small neurofibromas on a patient
Small neurofibromas on a patient | Source

Another NF Patient


Some NF Myths

There are many myths that need to be dispelled about Neurofibromatosis, mainly that it is contagious - it is not. This is a condition which people are born with - we didn't ask to be born this way. The misconception that it can be passed from one person to another - through either casual or intimate contact - is an an absolute fallacy. There is no reason to be afraid of someone when you see their condition, the tumors will not jump off their body onto yours.

Another misunderstanding is that this condition is the same as Proteus syndrome which is the condition Joseph Merrick suffered from. I won't refer to him by the nickname which he is better known by because I believe it's absolutely degrading to make reference to another person in the context of an animal. That should be hint enough, but the even though there may be some similarities between the two maladies, there are serious genetic differences between the two. The severity of Merrick's resulted in his death at the age of 27.

Much of what is written about Merrick online today makes reference to him as a medical curiosity and often the attention of carnival shows. A sympathetic and exploratory work by the famous English anthropologist Ashley Montagu, The Elephant Man: a Study in Human Dignity, offers a biographical portrayal of Merrick's life and the Victorian era physician who cared for him.

Joseph Merrick as a young child

Young Joseph Merrick - just like any other child
Young Joseph Merrick - just like any other child

Merrick in the movies

Merrick as portrayed in the 1980 film, at the theater with friends
Merrick as portrayed in the 1980 film, at the theater with friends

Some Things NFers Want You to Know

The fact that NF is not contagious has already been covered. Hopefully this is something that will be understood just as well as it has been said.

Please don't bully people with NF - many have had a hard enough life as it is. Some of experienced multiple surgeries before the age of ten. There are tumor growths which are visible as well as those that are unseen that grow on nerve endings, bones, and vital organs. These are physical painful as well as sources of anxiety because their placement could have a later affect on the well being of the NF patient.

Growing up being bullied has had a harsh affect on many. As adults there those who suffer social fears and encounter bigotry because of a condition that makes them look different. Many cannot have children and others have suffered physical disabilities due to the unpredictable nature of NF. Tumors can grow on the spinal cord resulting in paralysis. Many cannot enjoy normal activities such as walking their dog in the park. Some are ashamed to be seen in public and normal recreational activities such as visiting the public pool or enjoying a day at the beach are prohibited. These are activities which most people not only take for granted, but look forward to and are able to enjoy without any turmoil,

If you are curious about NF or someone you know has this condition, you can contact the Children's Tumor Foundation for more information. Or just type the word neurofibromatosis into any search engine and you will have your questions answered. Keep in mind there are three major varieties of NF: NF1, NF2 and schwannomatosis.and the one this article focused on was NF1. The other two, although a bit more rare, still are worthy of attention.

Overall, just be respectful to people and you'll have your respect returned. We're only here for a short time on this planet and eventually we'll all end up in the same place.

NFers have rights too

Please don't stare
Please don't stare

What can be done about the condition

Well one of the problems about even trying to talk about NF is whether or not to call it a condition or a disease. A disease implies the idea of an illness of sorts which in a sense implies that there is a specific cause or link and therefore a possible cure. At least in my silly layman type of thinking. Certainly it has some abnormal characteristics about it and people are often curious, but it is much more than a disease. Condition seems the more appropriate term.

Many people have undergone some surgeries to have certain tumors removed, usually because they are a threat to their overall health. Sometimes tumors grow along areas where they could cause complications if they are not dealt with: growths sometimes affect organs or important nerve endings which could result in paralysis or death. Others have undergone a process known as Electric Dessication which removes tumors through non surgical process by running a current through them. This process is usually done for aesthetic reasons so patients can achieve a sense or normalcy.

There are other options available involving a process akin to chemotherapy but this procedure guarantees that the patient will develop some form of cancer within a decade. So, the cure is probably worse than the presence of the tumor and it really makes no sense to pursue this option. I addition, the above listed operatives are not always permanent. Tumors can grow back and of course, there is always the chance new ones will develop.

Overall, I can testify that it is an unpleasant fact of life for many of us and we have learned to adapt and make the best of a situation which we had no say in: we were born this way and stares, questions, comments do not stop.

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