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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.
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
stint at White Castles, I was asked to wear a long
sleeve shirt under my uniform.
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
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:
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,
Hello! I am a mom of a
NF Hero, my 18 month old daughter. She was
diagnosed at 6 months of age, she has cafe au lait
spots all over her body. She had a mysterious bump
on the back of her skull which caused her first
MRI. That MRI showed my little baby girl has a
tumor wrapped around her C1 and C2 nerves in her
spine. It is at the very top of the spine, at the
base of her skull. Last year my daughter was having
MRI's every three months, thankfully they have been
reduced to every 6 months now. My daughter is a
miracle because she is growing and functioning
normally thus far despite her tumor! Amazing if you
saw on the MRI what we are looking at!!
We have changed the way
we eat and stay away from foods that have
preservatives, stay away from sugar and try to eat
organic natural foods. I started taking my daughter
to a craniosacral therapist. We have been impressed
with the therapists work and now take my daughter
for monthly treatments. (If you want more info on
the craniosacral therapy, let me know!!)
I have since then also
joined the NF Endurance Team through CTF and have
nothing but wonderful things to say about that.
Last year I ran the San Jose Half Marathon and
raised over $7,000. This year I am running the San
Diego Marathon in June and have already raised over
$5,000. The NF Endurance Team has been therapy for
me and I have had so many wonderful experiences and
have made many special friendships. I cannot say
enough about it. This email would be too long!! My
husband also joined the NF Endurance Team and we try
to keep my 4 year old son involved as it is very
difficult to explain to him why his sister has so
many doctor appointments. We are with Kaiser here
in California and we are lucky enough to attend NF
clinic in Oakland. My daughters doctors have been
all over her and they are very knowledgeable on NF
and they really do stay on top of things.
So a year later since my
daughter's diagnoses she is THRIVING. Docs do not
want to touch my daughter unless the tumor starts to
effect her. She is too little for chemo or
radiation and such. Surgery is not an option for my
daughter, tumor is wrapped around the nerve so
surgery could do more nerve damage. The only way
they will operate on her is if the tumor starts
effecting her motor skills and it comes to a point
where they would just remove a bit of the tumor to
relieve pressure on the spine.
Very scary stuff to live
with on a daily basis. I know you understand. That
is my story in a nutshell, click on my link below to
read my daughter's story!
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
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
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
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
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
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.
My wife was just diagnosed
about a year and a half ago or so she's 30 now, we
were just barely getting over me being diagnosed
with a rare genetic syndrome my self at the age of
26. I'm 31 now I have 22q-11 deletion syndrome we
both have physical and mental situations to speak
of, having one rare genetic syndrome in a family is
difficult enough but two has it's challenges, in a
way it brings us closer, even though most of my
problems are past physical corrections I do have
My wife has some more current problems
however, we face the fear of having a tumor grow
inside her at any time any where in the body. Not to
mention the tumors she has in her eyes making her
blind. Going for MRI's is challenging enough
considering she has to be sedated and the stress
leading up to one is horrible.
We have many many
challenges that we overcome with great pride but
fear too that there are challenges that we can not
fix on our own. We need the help and support of
family members and friends as well as doctors most
people and doctors in our area for that matter have
no idea what nf is or even 22q is for that matter.
It's tough having to explain over and over again but
at least we can explain before for the both of us it
was I don't know why I have these marks all over or
why I had to have scars all over my body from
corrective surgeries. Some of the challenges we face
are normal in a relationship or brought out further
by the syndromes, neither one of us has really any confendance at all, so we use each other to give us
that and strength.
My wife has some issues of not
thinking she's pretty who doesn't but with the café olay spots and the fibros on her head she thinks
she's ugly I keep telling her she's very pretty and
sexy which is true everything about her is unique
working is a challenge because of her eyes she's not
supposed to work at night but she does because it's
the only work around and her boss won't transfer
her, I drive her in when her vision gets really bad,
because I love her although it is a hassell driving
in at midnight to pick her up.
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!
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
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.
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.
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.
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
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
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
saw a Geneticist when I was about 24ish. It would seem I
was that spontaneous mutation, so the Nf has started
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
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
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%.
know there’s better testing for Nf. But I just hoped he
wouldn’t have it. I noticed quite soon. Café-au-Lait
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.
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
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
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.