Is it normal to be this afraid about my illness (nf1)

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8 Comments

Hi all,

So I have NF1 (neurofibromatosis)
I'm fortunate in that I think it's relatively mild
But I am so afraid of it :(
It means I get neurofibromas on an under my skin.. And 1/10 people develop complications (cancer)
So every little bump I get I worry about, it takes up a lot of my time researching about it~I don't want to always go to the doctors because I don't want to waste anyones time

I'm also afraid of having kids because 50/50 chance of my kids getting it, and I dot want them to suffer the same things..

is it normal to worry this much? What should I do...
I know it sounds ridiculous, but I'm scared, and im embarrassed to tell anyone, that's why I put it on here anonymously

Is It Normal?
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  • Decorum
    7 years ago | pl

    I have NF1 too and despite MRIs being good for a long time now and despite mine too is rather mild, I worry a lot too. Especially about kids. I wouldn't like to be responsible for, potentially, ruining my kids childhood and I wouldnt like this shite disease to live any further. This is also making me avoid relationships.

    Stay strong m8!

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  • Angel_in_a_Glass_Dress
    12 years ago | pl

    If you're worried about kids, have you considered adopting?

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  • chick756
    12 years ago | pl

    Enjoy your life...and whatever you can to live longer...many people don't believe...but miracles do happen...

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  • jensapa
    12 years ago | pl

    Try not to stress so much. Stress makes illness's worse.

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  • dappled
    12 years ago | pl

    I don't think it sounds ridiculous at all. You, more than most, have to look after yourself. But remember to have a life too. You only get one bite of this cherry.

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  • Inspector019
    12 years ago | pl

    Try to enjoy the quality of life you do have. Adoption is always a wonderful option as far as being a parent. Try not to focus on the "what ifs" and enjoy the abilities and positives in your life. No health problems are wanted or pleasant but there is always someone less fortunate.

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  • kitty_patrol
    12 years ago | pl

    I'm so sorry to hear this. :( but go ahead and live your life based on how you want to! Have kids take the risk. Look at the glass half full ;)

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  • georgienne
    12 years ago | pl

    If it were me, I'd calm my nerves by looking into it more. Chat with your doc about it, do some research.. I'm sure it will clear up some fears and give you firm facts you can lean on.

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