NF and learning disabilities

I am 35 years old, I was diagnosed when I was 19. If I remember correctly the doctors figured mine was NF1. I was very surprised to hear I had a "disease" I thought I was realatively healthy until I went to a nuerology appointment with my mother. She was seeing a specialist about NF because she was newly diagnosed with NF and they thought it was causing her seizures. They asked her if I had any problems and she said no. I was in the office looking at all of the literature on they signs and symptoms and I asked the dr about a spot on my arm he then asked how many I had. I showed him my back and stomach and he said it was very evident I also had NF. I asked what the mark on my arm was and he said it was just a tumor...I started to cry, he told me to buck up and not worry, and said for me to not cry about it and go to the library and educated myself. I couldn't eat for days thinking I had cancer and never really did much research because I was scared. I have struggled since Jr. High with learning disabilities the little research I have done stated many people with NF have some learning difficulities. Now that I'm a little older and have some life experiences under my belt, reasearch is not as scarey. but I would love any experiences or help with any others who have struggled with learning.
Thank you, Becky...aka littlefire76

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I can't spell or wright and was in ld class in high school no DR ever asked they found a plixi form on my back @35 i am now 40 also I have
A lot of things in my life that are nf related

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Hello littlefire76

Welcome to the group

I have a mild case of NF-1 also with learning disabilities it is frustrating you come to the place there’re a lot of nice knowledgeable people that can answer question you have. It is hard not looking on the internet for answers but remember you always hit on the worst case scenario, and then your in a panic until you find out it does not apply to your case, I hope you find the answers you’re looking for, Feel to e-mail me I will answer any question I can,

Anthony

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when i graduated from high school i didn't read well at all. i just keep working and i got better i now no why i had so much trouble. it was and still is NF1. i still cant spell to save my life. thank God for spell cheek.

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I Have had NF for as long as i can remember , I never knew what I had , Even my right arm was looking like it does now in School.
I remember alwasy wearing long sleve shirts ,
I gdid have trouble in School wit math, Answers i didnt know how I got whne the question before i had the correct answer. and My writing wasnt very good , or spelling, I never enjoyed reading because all the word ran together like this
ifawoodchuckcouldchuckwoodhowmuchwoodculdawoodchuckchuck. Just an example not all the words but You get the picture,
After i found out I that what I had was NF after failing the Physical for the Navy , I started to look for info ,I could hardly find any , My Mother got a small letter from the Gov explainng , She hid it from me not knowing I had found out More that She did.
I wasn tr till after I married My Wife in 1981 I seen a phone number for the NF Assocation in New york, then I had info abotu learning dissabilities, Words being turnd around, numbers left out and misplaced when writing, words running together,
If i had known of this in School I would haev been able to study harder.
these days i still switch numbers around and I have to look 2-3 timers to make sur e i have them right, i still ahve problems but others know and let me know and work with Me.
The same Gene that causes NF is the same gene that causes Dyslexia (not sure of spelling) aka Learnign disabilities.
So it is not uncommon for those of us to read an article 2-3 times to be sure we have the correct info , and why we are so
meticulous about what we do..
Hope this Helps
Kim
You can find me on facebook Kim McCarl
Or yahoo messenger Kim_mepa Please leave a message You know Me from here for Me to add you as Friend
If You want to add Me
I enjoy chatting and helping others with Info on NF

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Whoa Kimakame??
I was turned down by the navy and found out about my NF about the same time as you. (1978-1979).
I never saw a letter from the Navy... Hmmmm. What was it about? pray tell.

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ronloveGod1

Keep up with the reading I also have NF-1 learning disabilities I read slowly I started reading books about 8 years ago, When I was younger I hated it, my parent said they would give me $1.00 for every book I read, I never would, Also I'm a terrible speller I can't spell to save my life, I was told the more I read the better I would spell yah and I also have a bridge to sell you. but all kidding a side if you want I tell you some of the books I started with they are cool and so what if takes a day to read or a month or year or if you do not want to read so what but do not let NF discourage you,

Anthony

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My daughter Amber is 15 and struggled much of her life with learning disabilities. I researched very early on into her diagnosis...so I was watching for them. I fought with the school system for many years...as Amber would test on the low side of normal...but still in an acceptable range. After 5th grade...I could see we were losing her. She didn't want to attend school and was completely overwhelmed. Even with the most simple of tasks...she couldn't break it down into small steps...and get to an answer. I demanded that she have a complete neuro-psych exam by an independent firm...who was familiar with NF. Low and behold...she had some very specific learning disabilities. One being with executive functioning...she couldn't get organized for her day....or for the end of day. Projects were extremely overwhelming...and she needed some guidance on how to break things down into simple tasks...and she needed helped prioritizing. She also was reading at a much lower grade level...due to a processing disorder. When she would read things...she would hear the sounds differently in her head...changing the meaning of the text. They worked with her for 1.5 years on that specific issue and she's reading at her grade level now. She also has ADD...which we chose not to medicate her for. I put it back on the school to make accomodations for her to teach her in a way that works for her. She receives assistance from an ed tech to get organized for the day and before she leaves for the day...she's given extra time to complete tests and assignments...and she takes tests in a quiet room so as not to get distracted. I'm proud to say that after the accomodations...she's made the honor roll since...she was named "Most Improved Student" for all three years of middle school and was asked to speak at graduation. She's now in high school and advocating for her OWN needs and doing quite well! She has even begun advocating for other students who are struggling. She makes me very proud!

Keep researching...don't hesitate looking into an adult tutor...and keep pushing for whatever you need to accomplish your goals! You can do it...I promise you! xoxo

~Sue

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I have dyslexia and NF but my mam is the only other person in my family that has NF but a few of my cousins and my brother have Dyslexia so i just got unlucky and got both :/

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I have nf1 and also have struggled my entire life with learning difficulties. it has also been suggested that I suffer from Aspergers syndrome ( a form offunctioning Autisim )which has made it very hard for me to interact socially with others and build meaningful relationships. I would love to hear if anyone knows about asperger support groups where peoplem can discuss their experiences and bounce ideas off one another. As for my nf, I just have some pea sized bumps that seem to come and go except for the large one on the back of my head/neck which can easily be concealed a so long and I keep my hair long in that area.

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I as well struggle with a learning disability. I have short term memory. I am always depress. I can not hold a job for more than a year. I thought i was stupid or something. I have had some tumors removed from my face, thigh and hand. i have so many on my stomach which no one can see.
i am afraid. I am on unemployment and about to lose my house do to the fact i can not hold a job. I was wondering if NF1 has anything to do with. i am responding to you because i feel i relate to what you wrote. Also i am so depressed and forgetful. every time I read up on NF i get more scared and find out that there are a lot more people that are worst of than me.
i also wish more people were aware of this disease.
I also can not spell or write. i also slur my words and my boyfriend of 26 years calls me stupid and thinks i am on drugs. he does not understand me or NF. he does not want to know anything about it.
thanks to all of you. i do not know what i would do without you. i should go on this site more often than i do. But i do not and do not know way. God Bless all of you

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I joined the USAF after I graduated from Wright State University with a BA in psychology. I, and I guess they (Air Force) knew I had NF 1. I joined in 1978 and retired in 1998. I then worked as a Respiratory Therapist for 12 years and got a small retirement. I struggled esactly like Kim said. I repressed alot of it (nf) and denied it. Now it has me in it's grip. I was 63 inches a few years back. I am 59 inches. Yes, the bumps, curve, bent back. the mental challenges like you mentioned Kim is getting worse. I am hiding it still. If would have known you most definately would of studied, tried much harder. I didn't tell a soul, except the medical people who needed to know. One thing I can thank my father for who retired after 33 years. Lt. Col. WW II pilot Vient-nam, intelligence alcoholic "When you finish college you better go into the military, Air Force!" I got into a little trouble with the law............. I had to study really hard throughout my life. Read material over and over again to retain it., and sometimes I don't know how I did it. I did. Thank you Breathgiver

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Pepsigirl, the short term memory loss could be due to depression. You should seek some psychological therapy to help to deal with this. Though some of your learning problems could by due to NF, treating your depression really could help.

I understand it is hard to get those close to you to accept NF. My daughters siblings are very resistant to suggestion that she needs to be cut some slack. One of my teenagers once looked at my darling NF daughter who slurs her words and said..."I can't understand you so don't talk" I was furious. Those close to you (your boyfriend) need to understand NF. Keep telling them about it until they get it. Be strong for yourself.

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little fire,

Learning disabilities only occur in about half of the NF population. They occur in about ten percent of a normal population, so that is a pretty huge jump. My NF daughter has to work much harder to keep up in school though she hasn't fallen enough behind to be called disabled. Speech problems are even more common. I don't think it holds many people back. Life is good.

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Well, it's certainly held me back. I struggle everyday, I feel like I'm 10 steps behind others in my class, and have to take twice as much time when doing homework. I've struggled since I was in the 6th grade with learning and I'm 35 now.

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Today has become an annoying day..it was good. Now I'm just annoyed and irritated.

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I can not stand people who think they know everything, especially when they don't even know you or what you have gone through in life.

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I appreciate those of you who have shown sincere care and understanding and given me advice and not just lame statistics that are not going to help me get through the day. I appreciate my new friends.

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Thank you Sue, it is always helpful when you have people on your side cheering you on!

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Jenjensmom,I don't know if you have personally struggled with learning disabilites, but it is extremely difficult, and I really don't understand why you think statistics are going to help me understand and cope with my daily struggles, but whatever. I really need to let this irritation go .it's caused many sleepless nights..and frustration!! but i guess you were trying to help..but it really didn't!

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littlefire76

I know what you mean about feeling behind other people in class and working twice as hard, It has been years since high school, and I still have those feelings, If I didn't have LD our lives would be different. I for one would love to write I have many ideas in my head and can see it play out, the problem is I can't get it to the paper, I really admire that you went back to school. With my work schedule and other commitments I just can't find the time I probably could but part of me is afraid to fail and I just do not have it in me to do it, I like coming home from work going out if I need something or just to watch tv,

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