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NF (Neurofibromatosis) Voices: What Some of Us Want You to Know

Author:

Finnegan is interested in social issues, finding new places to travel to and enjoys writing

nf-neurofibromatosis-voices-what-some-of-us-want-you-to-know

What is NF

Neurofibromatosis is a genetic disorder - according to the Mayo Clinic - that causes tumors to grow in various areas on the body including, nerve endings, the spinal cord and even the brain.

There is no known cure and there are three types, although NF1 is more common than the others. According to online sources: Neurofibromatosis is usually noncancerous. There are three types of this condition. "Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body."

It is usually inherited or manifests itself through a spontaneous mutation - which basically means it just happens.

It's a fairly rare condition, affecting one in three thousand births.


Why I Am Writing This

Well there really isn't one way to describe what NF is like except to say that it is different for everyone who has it. (Just like any other situation perhaps). Some people have difficulty with the stares and the social ostracizing they experience. Others are not bothered by it at all.

The one thing people should know is that NF is not something that was asked for. It is a condition that can cause disfigurement, physical pain, medical complications, complications with mental faculties and social anxieties. For some it may mean not being able to find satisfying employment because someone may be afraid to hire you because they think you might be contagious. Sometimes it means not being able to go out to places such as a public swimming pool, a park or the single's bar. It may mean that it is difficult to find friends or a partner.

I am writing this because I have NF myself and honestly, don't really have that much of a problem with it. My condition isn't as severe as some others, but it is noticeable enough for me to be in a position where there are stares, comments and questions from strangers. Sometimes I've responded angrily to people asking about my condition, particularly my eye, because they make the assumption that I am the victim of some sort of violence. This puts me in another peculiar position which is another story altogether.

When it comes down to it, as uncomfortable and complicated the condition has made my life, I don't think I would ask for it to be taken away. This was the way I was born and there is a reason for this that I don't understand now, but will find out.


The Purpose

For many people however, this situation - and I hesitate to call it a disease - is not an easy one to deal with. Many have tumors which are seriously vicious and impair some of their basic functions. Others have had to experience numerous surgeries. Some have developed agoraphobic behaviors. Some have suffered and passed away from the complications associated with NF.

I want to share some of their stories in this piece and shed some light to the readers about NF. It receives relatively little attention in the media and when there are stories about it, most of the reporters come across as insensitive or disparaging. There portrayals in popular culture tend to be almost mocking and treat NF like something freakish.

People with NF are just that people. In short, they are "human beings". (Not a phrase I like to use because it sometimes evokes laughter).

Much of the information from below comes from a survey I created and released to those with NF. I thank them for their input. I asked people what they thought about the condition and how it has effected their lives. I asked them what was hardest about the condition and the easiest. Most of all, I asked them what they wanted people to know, which is the purpose of this paper.

A link to the survey is found below, at the end should you wish to take it yourself.


nf-neurofibromatosis-voices-what-some-of-us-want-you-to-know

Taken from the NF Comfort Survey

Question: Does NF Have an Impact Upon You Socially?

AnswerPercentageRespondents

Yes - in every way

16.07%

9

Sometimes - if I let it

66.07%

37

Not at all

17.86%

10

What We Want People to Know

Generally, the major concern that people have with NF is that it is not contagious. There is no reason to go out of your way to avoid someone with this condition, nor do you have to worry about any physical contact or even being in the same room. It may appear unsettling to someone who doesn't have it of course, but living with the condition requires a great deal of resilience.

People with NF have to deal with stares, questions, people pointing and doing things which would be considered rude or even discriminatory were they geared towards certain populations.

And of course, there is a bit of a double standard because of our condition, we are often treated as second class citizens. In other words, we are expected to put up with behaviors that were they committed by us, would be severely punished.

Sometimes people are outright mean as well, saying things that are offensive, like calling someone unattractive or a freak. These are things that should be said about no one. Most of the persons with NF I've surveyed say they think it is better to remain quiet or walk away. No one with this condition would wish it upon someone else, even their enemy. Very few would speak about others the way they've been spoken too.

In that respect, one of the benefits of having NF is that it teaches you tolerance for you fellow human beings and respect for the Golden Rule.

nf-neurofibromatosis-voices-what-some-of-us-want-you-to-know

Although many people with NF will say things like F off to people who insult them, most walk away and do not let it bother them. This probably exemplifies one of the benefits of being born with NF. You learn a lot about tolerance and resilience.

Some Common Conditions

Current available statistics and estimates (2019 - 2020) for some common conditions. Numbers are taken from online resources and represent figures for the United States.

ConditionNumbers (US)

Multiple Sclerosis

250,000 - 300,000

Cancer (all)

1.6 million; 589,430 fatal

Neurofibromatosis

90,000

HIV

1.1 million

Cerebal Palsy

764,000

Muscular Dystrophy

250,000

Some of Our Hopes and Dreams

Just like anyone else, people with NF want to be able to find a job and become self reliant. Often there are factors with the condition that prevent the realization of this ideal. Some people with NF have some slight cognitive limitations along with the physical elements, which is true with any segment of the population.

Most people with NF work hard and don't even acknowledge their disease. Many are unaware of their condition, until someone else asks about it or mentions it. And really, this doesn't happen as often as one might think or what it seems like I am trying to imply. Most people in the world are pretty understanding. It's a fact though that the negative has a tendency to be more noticeable. Good news doesn't sell. Movies about good things gain little revenue. When someone treats you wrong, it's more memorable than the polite courtesies you're offered.

People with NF want a chance to prove themselves in the world and for some of them that may take a little longer. They want to be able to obtain friendships and a partner. There is discrimination faced by those with NF especially given our media driven culture where physical appearance is one of the major attributes by which you are judged.

The blemishes, bumps and bone influences caused by the condition can be distressing those who are not familiar with it.

From the Survey: How Often Are You Aware of Your Condition

Taken from the NF Comfort Survey. Question was: How Often are You Aware of Your Condition?

AnswerPercentageRespondents

Extemely Aware

60.71%

34

Very Aware

17.86%

10

Somewhat Aware

19.64%

11

Not So Aware

1.79%

1

Not Aware at All

0%

0

Please Don't Treat Us Different

Although there are rules and policies in place that prohibit discrimination on everything from race and gender to genetic information, this doesn't change everyone's attitude. We all have to deal with barriers when it comes to finding employment, obtaining fair treatment in stores and restaurants, and even in social situations. No one said life was fair and no one here expects any preferential treatment.

Try understanding that there those who have NF to varying degrees. You may be confused on how to treat someone who looks a little - or very much - different. The answer to that is simple, treat them like anyone else.

Taken from the NF Comfort Survey

Question: How Often Does Someone Else Remind You of NF in Some Way (jokes, questions, remarks)?

AnswserPercentageRespondents

Always

12.5%

7

Usually

16.07%6

9

Sometimes

33.93%

19

Rarely

26.79%

15

Never

10.71%

From The Doctors: The Girl With Half a Face Fights Back

In Conclusion: Life Is Not Always Easy, But We Won't Complain

Certainly life isn't really easy for anyone, but sometimes there are hands you are dealt which make living a little more difficult. For some people with NF, they had it severe in their childhood and may have been the victim of bullies or taunts. Some didn't realize they had it until they become adults.

The thing about NF is that it is an unpredictable condition and sometimes worsens as you grow older. Many of the people appeared "normal" when they were much younger and then had symptoms appear. There are some who this was probably a bit of a shock too of course, and there are others who adjust accordingly.

I think about how hard some kids had it in school - those without NF - and I can imagine that for those who have it, it could have been more difficult. I have been fortunate because I was raised by good parents who taught me how to laugh at things and not make a big deal of trivial events.

Some people with NF are the strongest persons I've ever encountered. Many have accomplished quite a bit and are not afraid to be in the public. It's been rumored there are a few celebrities that have NF - although I won't get into that here.

It probably doesn't do much good to complain anyway. If life gives you lemons you are supposed to make lemonade.

So I think for now, I will sit back, put my feet up and look for some ice cubes. I know there is a carton of a refreshing beverage in my refrigerator and even if it is empty, my neighbors lemon tree is encroaching over my back yard fence.

NF Comfort Survey

  • NF Comfort Survey
    Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2019 Fin

Comments

Fin (author) from Barstow on November 13, 2019:

thank you. Yes there are many cruelties in the world and numerous strengths. some things are a curse, a blessing in disguise. One day, everything will seem fair and make sense.

Patricia Scott from North Central Florida on November 13, 2019:

Understanding a condition often makes to help form a bridge to kindness and compassion. There are many who are taunted by a condition such as this and it saddens me that humans can be so cruel to one another. Thank you for sharing the voices of some who have learned to live with this and for others who find it a day to day struggle. Angels are on the way to you this morning ps