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New to this site, trying to find relief...

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New to this site, trying to find relief...

Postby NursingStudent86 » Tue May 12, 2009 3:57 am

Hi, I am 22 years old, and my sister who is almost 18 years old was diagnosed with NF1 since she was borne.
she has the cafe-au....spots all over her body. she has a curvature of the left tibial bone. and now there's some probable nerofibromas all over the body barely developing, but they are not seen yet, you just can feel them, but you cannot see them. are they going to grow?
My mother and I have lived a life crying for her, just the two of us, because we haven't had the strength to let my sister know what she really has. well, I have just respected my parent's decision to know tell her yet. My mom believes that if we tell her, the disease it's going to develop more, and she will get depressed.
She is a very quiet pretty girl, and we don't know what's awaiting for her. It has passed 18 yrs since I know about her disease, I have observed how she develops, and every time I see something different, my mom gets sad, and I do too, when I am alone.
Sometimes, I am very afraid. And all I can do is pray, as we always do. I don't want her to suffer.
Will her disease develop more with age? or pregnancy? is there any psychosocial factors?
She is fine right now, with no other signs that affects her self-esteem...since she always wears jeans so, nobody will see her bent bone (she used to wear a cast, but she decided to take that off permanently a few months ago, since her bone is apparently strong), she wears enough makeup to cover as much as she can the freckles on her face, and just ignores the cafe spots all over the body, because she thinks they are just moles.

should we tell her? how? when? I love her very much... :(
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Re: New to this site, trying to find relief...

Postby Blaster » Tue May 12, 2009 6:18 am

Welcome aboard...
Your sister is welcome also.
Please tell your her about NF.
Including NF is dominant, thus there is a 50% chance of her children inheriting NF, with no way of predicting the severity in her offspring.

Perhaps she understands much more than you believe.

The good news is ... if she has lived 18 years without major difficulties, ... very likely her NF will remain relatively mild.
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Re: New to this site, trying to find relief...

Postby Green_MnM » Tue May 12, 2009 12:30 pm

Yes, you need to tell her. Frankly, I'm disturbed it's been kept from her for this long... she might be more upset that you guys did that to her than about having NF.

I think you guys as a family needs to sit down and become educated about NF because it seems you and your parents have a skewed understanding of NF to have kept this from her thinking of the worst things possible.

She has the right to know. It's her body. As blaster said, if she hasn't had major issues, she likely has a mild case, but tell her now rather than waiting for something to happen
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Re: New to this site, trying to find relief...

Postby seesnow » Tue May 12, 2009 1:07 pm

Welcome! I am glad you have found the site. I agree with the others that your sister needs to know, but I would certainly involve your mother in telling her. I would probably educate yourselves so you have answers to questions that she might have or at least let her know about this website. NF isn't something to hide - it's just something that takes some adapting to, but many, many folks live uneventful and productive lives.
Timmy's Mom

Satan doesn't care if you are Christian or not....as long as you don't act like one!

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Re: New to this site, trying to find relief...

Postby newbie » Fri May 15, 2009 12:43 pm

I agree with what everyone else has already said. She needs to know she has NF.
Mom to David (NF1), mulit Cals, left leg tibal bowing, learning disablites, speech delays and great son and brother to Vincent (also a great kid.)
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Re: New to this site, trying to find relief...

Postby jody08 » Sun Jun 14, 2009 7:50 pm

I also agree everyone also. You need to tell her. We are her to help you to understand it.
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Re: New to this site, trying to find relief...

Postby Eire84 » Thu Oct 22, 2009 10:01 am


I reckon it's best to let her know. I am almost 25 years old and was diagnosed at birth with NF1 due to pseudoarthrosis in my my left tibia. I have suffered from intense headaches and frequent migraines all through my childhood and teenage years and this is getting progressively worse along with other symptoms that many here on this forum know only too well. I was never told what my condition was, I just knew there was something wrong when I was born. I only found out when I was 20 because I made my parents tell me what was actually wrong all those years ago because I knew if it was going to impact me then I would need to be accountable for it. I think you should give your sister the dignity to take responsibility for it herself but let her know that you and your mum support her in that. My family continue to bury their heads in the sand regarding its existence.

I will admit that I was hurt and angry that such vital information had been kept from me, although I am relieved that I now know what the matter is and also it's good to know that NF1 explains the symptoms that I have had all my life.

I know this reply is a bit after the fact but I hope it helps - may even help parents who are struggling with the impact of the condition on their children.
~ If you're lucky enough to be Irish, you're lucky enough ~
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Re: New to this site, trying to find relief...

Postby dbsherri » Wed Jan 19, 2011 3:46 pm

I'm a tad confused....this isn't the dark ages; how could a doctor keep this information from an adult? And at 18, she is an adult. I am 57, was diagnosed at 11, and my parents kept me informed all along, though they themselves were unaware of the learning disabilities part of it, and it caused all sorts of problems with me in school.

Keep her informed. It's vital.
I wish to make a noise with my feet
I want my soul to find its proper body

Piano Solo/Nicano Parra/Translator: William Carlos Williams

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