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 My life has been touched by so many families affected by Neurofibromatosis.  I am blessed to have this many close friends.  Here are some of their stories, about how they cope with the diagnoses.

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Neurofibromatosis.
 
This long, scary word has an equally long list of complications that can accompany its name. NF is usually inherited or occasionally can appear by the bad luck of the draw. I drew the wrong card!

I have had several surgeries to remove tumors that were painful or in an awkward place where garments may rub on them. Many, many times the tumors just return (and bring their family) In my case, there are so many tumors that they overlap one another.

Being different is very difficult and it gets old sometimes. I was in the Learning Disabilities classes in school. A lot of kids referred to us as the “little dummies.” I had very few friends. As the disease became more and more evident. So did the cruel remarks, teasing and hurtful names. They even called our home to make sure I did not get any peace. I was very self-conscious, but thank God, I have great parents that were so supportive and ready to help me fight my battles and prepare me to be a strong adult. High school should be one of the best time in a person’s life. I had maybe two or three friends that would even speak to me.

Would life be easier as an adult? Not really.

People are afraid of “different.” I have been discriminated against so many times, and there is a law against discrimination, but it is extremely hard to prove. I have been asked to step out of a boarding line at an airport and questioned in front of other passengers. During my short stint at White Castles, I was asked to wear a long sleeve shirt under my uniform. 

My parents raised me to be all that I can and to have goals. It took me years to get my associate’s degree in child care education. I could finally foresee a decent raise in my pay. When I was called in to the office so full of excitement to hear this news, I was told I was no longer needed. My times of employment at so many different daycares was always very short. Children didn’t have any problems with my appearance, but their parents were afraid of “different.” So directors always found a reason to show me the door, even though I had my Child Development Degree and letters of commendation from parents.

A person can only do so much…and this person refuses to wear a bag over her head. A sense of humor, perseverance, and love and support keep me going. Every morning I am blessed with a new dose of grace and love from God. I am strong.

I have several friends that accept me for ME. They choose to look past the NF and see ME. I have made some wonderful friends through face book. In fact, I responded to a scared mother’s comment. Doctors told her that her child may have NF. Thank God, she doesn’t, however, this mother who is very educated and well spoken has introduced me to a group of people on face book that have NF or have relatives with the disease. This wonderful woman has decided to become an advocate for NF, even though her child does not have the disease. God certainly does work in mysterious ways.

There will be a walk in Lexington on October 1. I will be there to do my part in raising awareness about this disorder and also to do my part in FINDING TREATMENT for NF. If you would like to sponsor me, I will have a container in the lobby for the next two Sundays to raise money for this cause.

I am so thankful for my Church Family that cares and treats people the right way. You don’t realize how much your acceptance has helped me. My life has been a rough journey, but gosh, I look around me, and I soon realize that everyone has their burden and difficult roads to travel. I know I am blessed and I never travel alone. God is always with me.

I saw this quote on facebook and I have sort of adopted it as my own:
 
“Before you judge my life, my past my character …. Walk in my shoes,
walk the path I have traveled, live my sorrow, my doubts, my fear,
my pain, my laughter! Remember, “Judge not lest you be judged.”

Everyone has their own story! When you’ve lived my life, then you can judge me!”

As I said, my road has not been easy, but I am blessed with so many supporters that HE has provided. I have learned to take one day at a time, and appreciate it as the gift it is. I look forward to sharing with you about my walk in Lexington. You can’t sit around and whine, “Why me…” hey, why NOT me. Maybe God wants me to be an advocate. As long as I am able, I will do this walk each year.

God bless each one of you,
Jennifer Aoun

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My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone.

Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed if they bothered me. I can remember some kids in school remarking about these big lumps on my arms, some wanted to know if they could catch it. Being a kid myself I use to tell them that they were African Mosquito bites. I knew what I had and at times had to inform the school doctor when he came around the schools for our yearly check ups.

Other than the few operations that I had to remove tumors, I made it through school OK. It was 1969, I was graduating from high school and the draft was on. I was a low number and felt that I should go sign up and serve my country. I had a background in electronics and had my Ham Radio License. I took a test at the military base and they told me they would send me to radio school. I was glad to hear that news. They then sent me for my departing physical. As soon as the doctors seen me they said I could not be in the military because of my disease. I was kind of let down felt rejected or less than. Most guys in the 1960’s were trying to get out of the draft, Strange me wanted to and see some of the world. This was my first big let because of NF.

I then went into a local electronics school for two years 1969 to 1971. When I finished school I started my own business installing security and fire alarm systems. In 1972 I married my bride Gladys. Through this work I did knew people on the Fire Department and heard that they were hiring. I filled out the application and I got the job as a Firefighter that was in 1973. I still ran my business part time. Also that year I took some classes and became an E.M.T. I was thrill, despite my disease I was moving forward in my life.

In 1974 my wife and I had our first child a little girl we named Jennifer. You can find her story in her own words on myspace. She goes by Jen Neurofibromatosis. Then in 1977 our son Patrick was born, he too is on myspace and he goes by pokertramp. They are also both on Facebook. They both have NF and have had several operations.

While I was on the fire Department I did have a few tumors removed that bothered me while I was doing certain types of work. I was always back to work in a week or so.In 1980 I had some friends that were in the National Guard. They ask me to join too. I told them what had happened in the 1960.s where I was refused do to my medical problem. They told me to give it a try. So I signed and and I got accepted in the Army National Guard. I was sent to Fort Sil, OK for basic training. I went through basic training at 30 years old with tumors showing on my body. I made through basic training without any problems.

I then came back to Massachusetts to serve with my unit. Within 2 yrs I made it to E-5 Sargent. I was very happy I had a good job as a fire fighter / E.M.T. my military and a nice family Then in 1983 I was having a problem with tingling in my hands and weakness grabbing things. I went to several doctors and they could not find anything wrong with me. I knew something was not right and I was able to get into Mass. General Hospital to get checked out.

They found my problem the first day there. I had a tumor between C1 and C2 on my upper spine. They told me that they had to operate right away. I could move the wrong way and the tumor could cut off some major nerves in my neck area. The operation went well removing the tumor and preventing further damage. After the operation I had very limited use of my arms and hands. Because of this I had to give up my job as a Firefighter and E.M.T. I also had to leave the National Guard.

All that I loved doing was gone from my life. This was another big let down in my life letting go of something that I truly loved to do. I also had to sell my alarm business, because I could not work. I was told that I was permanently disabled. I did collect for a while and kept forcing myself to do more. I was finally able to get a light duty job in a factory repairing machines.

This disease was not going to keep me down. I would have more tumors removed during the 1980’s each time I worried what would happen if I could not work again. I found an answer to this and went back to school part time 1993 while working full time. In 2002 I earned a B.A. from the University of Massachusetts. Through those years I would have several more operations. During one operation that was going to be same day surgery, I woke up 3 days later in the I.C.U. I had another type of tumor on my pancreas called a Pheocromacytoma. I was told they lost me on the operating table and had to bring me back. It was removed a few weeks later. 

At this time in my life I am still able to work in the maintenance trades. If anything happens I do have my B.A. where I can use my mind if I cannot do physical work anymore. I do have some tumors on my body that give me pain. The worst one is on the sciatic nerve in my left hip. At times it gives me great pain mostly it happens when I sit for over an hour and a half. I have been told many years ago that it is inoperable. Maybe someday I will check and see what is new and if anything can be done about it. 

For now I mainly worry about my children, Jen and Pat and all others suffering from NF. I hope that the doctors can help them and that they find new methods to help all those with NF. I’m hoping that the research that I am now part of will help find new methods for treating those with NF.

John Walsh

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In 2008, at 2 years old, our son Koda was diagnosed with NF1. He's now 4, and we are dealing with the complicated and unpredictable parts of NF. I know things could be so much worse, but who in their right minds wants their children to deal with anything that affects their health, appearance, etc?

In 2008, at 2 years old, our son Koda was diagnosed with NF1. He's now 4, and we are dealing with the complicated and unpredictable parts of NF. I know things could be so much worse, but who in their right minds wants their children to deal with anything that affects their health, appearance, etc?

Koda has one dermal neurofibroma at the middle of his spine, and a large neurofibroma that runs from his C2 down the left of his throat, and into his chest cavity. It has pushed his airway over to the right, and is up against the larynx, and surrounding area. It has also engulfed his carotid artery. 

No one will touch him as far as de-bulking, or removing it (we know that it will come back) due to the complications and high risk to the artery. Each day, he is dealing with swallowing issues, breathing issues, vomiting, gagging, restless sleep, but, thank God, no pain. Koda is delayed in his speech about a year, and has behavioral issues that can make someone go crazy. 

We have had him in a clinical trial for Gleevac in Indy but with no results, since Koda  is not able to swallow the meds. It's too bitter to just mix or place in other foods. We are awaiting sleep study and swallow test results. These will be done by the end of October. Koda also takes speech and occupational therapy, and will be scheduled to begin behavioral therapy as well. Its a long wait to get on the active list.

We are told sit, wait, watch. If it becomes life threatening, we’ll see then about doing something else. I don’t do well with that answer. I have great faith in my loving heavenly Father, God; so I of course turn to Him first and foremost. 

I also have two daughters, of whom one has cerebral palsy. She is the hope God has given to me that proves doctors don’t always know what they are talking about, nor do they have the control of what is a predicted purpose in one’s life. She is a miracle story in itself! 

-Yvonne Rentschler

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I don't need tattoos. I have spots. I love my spots. It's so different and weird. As much as NF worries me about my health, I'm not sure I'd trade it in to be “normal”. It's depressing sometimes and makes me feel like a freak when I get socially awkward, which is all the time. I'm not sure how NF will affect my future. I just know it's going to kill me someday.

I was diagnosed with NF1 when I was about two. Before Kindergarten, I was in Special Ed for a year (I think) before going into mainstream school with extra help, speech therapy classes (which I was stubborn in). I had many, many MRIs in my life, probably a few a year, which has now waned down to one every other year or so. I'm lucky to be this healthy. I'm lucky to have the problems I have with coping. My problems are more psychological and how I look, how I talk, and how social I am. And yet still I struggle. I still feel like a freak.

It's something I never talk about to normal people. A co-worker asked me about it after seeing it on my Facebook page, and I brushed it off, somewhat embarrassed, like a kid with its hand caught in a cookie jar. I don't talk about it to people I don't trust, which is nearly everyone. No one knows about it anyway. To them, I'm just a bit “off.” I'm okay with that. I tell people altered versions of the truth. “I just have bad hands.” I say, instead of “My NF affects my fine motor skills and become clumsy, so it's very hard for me to write, pipe, and crimp neatly.” (I have a Baking and Pastry Degree, so decorating skills are important, and I lack them severely) It's too much to explain and understand. It's best that they don't know. I'm used to the teasing and comments. But Facebook, believe it or not, has made me open up more about my NF than anything else. I've found so many friends, who make me feel so accepted and normal with how I feel and what I go through. It's so comforting to know there are people out there with things you can relate to with MRIs, nerve pain, itchiness and tumors. There's always someone to talk to.

I'm not sure how I feel about NF. I think about it every day. Wondering when it will get me. If my thoughts about only living to 25 will be true. If I do make it past that age, what will my life be? It's going to get me someday. Good health doesn't last forever. You'd think that thoughts like this would challenge me to do all sorts of things: skydive, travel to a distant country and eat bugs, swim in Hawaii, climb mountains, eat cheese in France. But I don't. Not yet. Doing so would seal the deal of my death date. So I'm here. Working twice as hard as everyone else just to prove that I'm normal. A “high functioning freak”. My prognosis when I was two years old was I wouldn't make it past the mental/functioning age of 6. So for me, to have a job, college degrees, a car paid for with my own money, and a guy I'm practically engaged to is sort of a big deal for me. Small wins. Stuff you Normals take for normal is a small win for me.

But I try to make something out of my life. I see the positive stuff that is in NF. How hard I try at my job. Being compassionate and friendly to people who are different. Possessing deep empathy. Trying hard to be my own person and make the best out of my situations. And of course, I love my spots. I have the affection for them like one with a tattoo would. The blotches of cafe au lait on my skin. They stick out, like some sort of Freak Alarm. If I didn't have my spots, if one day they were to be gone, and I'd have normal skin, I would feel at a loss. NF is a part of who I am, and while it may kill me someday, I have no idea
what I would do without it.

-Jenni

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I was diagnosed at 23, in 1987.  But to tell my story I need to go back several years.  From being very young I’d noticed brownish coloured marks on my tummy, and sides.  My mother said they will be birthmarks. At 11, I had Chicken Pox (this will have some anecdotal significance eventually).  I was left with some blemishes.  They didn’t fade though.  In fact, there seemed to be more.  They didn’t look scar-like, at all, in hindsight.  I have heard a few others speak of neurofibromas making appearances after chickenpox bouts.

By the time I was 15, I had many more pinkish lumps, and blemishes.  I went to see my GP (Alone, I was independent) He told me I had acne, and prescribed a paint called Actinac.   He said acne can last years and ease by my early 20s.  I wasn’t convinced.  I knew acne occurred more with oily skins.  My skin always was, and is dry, and itchy.  But I used the paint on the affected areas.  It never worked.  I didn’t go back again for a number of years to see the GP, about that problem.

I was 23 by the time I thought I’d go back, and see a different GP in the Practice.  He looked and said he’d send me to see a dermatologist.  The consultant took a look and said I had Von Recklinghausen’s Disease (I asked him to write that down).  And there was no cure, and that I’d just have to live with it. It would probably get worse.  He brought his nurse in for a look too, telling her you won’t see this very often, having a fiddle of a fibroma.  Not much help or good bedside manner. 

I couldn’t remember what it was called, and couldn’t read his writing. I went to my local chemist, for them to decipher the consultants writing.  I knew chemists have to decipher doctors writing all the time.  This time, I wrote the name out, and didn’t forget!  I wanted to find out more.  I wrote to Woman magazine medical problem page.  They sent back details of a support group in UK, called LINK (lets improve Neurofibromatosis Knowledge) Later to become The Neurofibromatosis Association.  I learned Von Recklinghausen’s was the old name.  (This is the classic Nf1).  The groups information, and leaflets were an enlightening source of information, and the Family Support Visitor from them helped me so much. (It gave me knowledge I could use eventually when speaking to Doctors). Back then we was still under the impression this was what Joseph Merrick, The Elephant Man had.  That in later years was revealed to be Proteous Syndrome

The consultant also had given me a plastic container.  I had to put 3 days worth of my urine into it, for testing.  This would tell if I had kidney problems leading to blood pressure problems, a secondary problem associated with neurofibromas growing on the kidney, and adrenal gland.  So when I took that back, I asked if some could be cut off.  I had about 10 done under a general anaesthetic.  Not really a good job. They came back. 

Removal of fibromas got better especially when a dermatologist passed me to the plastic dept.  They did much better extractions, and left neat scars too.  I’ve had smaller ones burned off with YAG (I think) lasers.  Not bad result, but only useful with the smaller ball looking neurofibromas.

I saw a Geneticist when I was about 24ish. It would seem I was that spontaneous mutation, so the Nf has started with me. 

You know they can grow anywhere inside/outside of body.  Many books only give a brief description of tumours mainly on trunk!  Puh… They are on soles of feet, fingers… They grow on my head.  One looked like a nipple, next to my nipple.  The vulva too, nothing is spared.  I can see small ones on my chin and forehead.  They’re under the skin, sort of.  But I feel that they will grow. In fact sometimes I’m sure odd ones come up overnight.  And then there’s the itching… They itch so much at times.   I had an MRI, as I was getting odd “episodes”.  I felt they sounded like I had Temporal Lobe Epilepsy.  The MRI came back, but wasn’t conclusive.  I was given medication, since then, I haven’t had any of those episodes.  But I have 2 neurofibromas on the brain.  The Neurologist wasn’t too concerned about those, and said it goes with Nf.  At least those episodes have (or for now) with the meds.  I also take meds for depression.  I’m not supposed to drink with either, but I did with the antidepressants on their own.  I’m not a drinker, but sometimes I want to get drunk!  Just sometimes, that’s all.  Now it seems I can’t.

Relationships, well I was no sweet angel, and many out they don’t care what you look like, as long as they can get what they want, I found out.  I once had a b/f that "joked" about joining up the spots.  I didn’t feel he should make the jokes.  I CAN make comments about it that amuse others, that is my prerogative.  Id say that the little lumps on top of hand forms a pattern like Id had body modification implants in.  And people pay for that doing!

My son is now 14.  I had 2 miscarriages before him.  A triple test said Id a 1:80 chance of Downs Syndrome baby.  The Amniocentesis was all clear. After all that misfortune, surely Robert wouldn’t have Nf?  Wrong!  Yes the wrong 50%.

I know there’s better testing for Nf.  But I just hoped he wouldn’t have it. I noticed quite soon. Café-au-Lait marks, giveaway.

My son has complications.  He had a hole in the eye socket, and brain slowly pushing eye forward, and downwards. There is Nf within the eyeball and not much sight.  The hole was sealed off with a titanium shield to stop frontal lobe pushing.  The eye is still big, and sticks out.  That will be removed, and a prosthetic one put in.

I’m divorced now from his dad.  Many reasons, but I get the feeling the Nf didn’t help.  He didn’t touch me when I was naked.  My b/f doesn’t mind at all, it doesn’t bother him; he takes me for being me.

Actually I still use Nf instead of NF. The shortened form on Neurofibromatosis is unfortunate.  I know NF isn’t around in UK, but we know that’s what BNP is really, I know for a fact that’s how BNP racist people feel.  It’s ironic that the Nazi, Nation Front NF, had same initials as a genetic condition. Hitler was against anything like that, lol

I think (or hope) more people who know about Nf, the better understanding.  Many still say disease, when it’s a condition.  Read the comments written on ”Polls” application on Facebook.  There are so many that are ignorant.  But thankfully many that do understand.  No doubt those are the ones that have it themselves, or a loved one.

People aren't nasty about CF, and many other genetic conditions.  Or many other charitable concerns in general.  But I think with Nf, its the disfigurements that can be involved.  The ignorant don’t want to be associated with disfigurement, its bad for their pretty beautiful image.  I’m sure that’s something to do with why other charities seem to get a better look in.

 -Joyce Smith