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  • When will it get worse?

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    Old 11-08-2014, 10:01 AM   #1
    Join Date: Nov 2014
    Location: Minnesota
    Posts: 2
    OwlConundrum HB User
    When will it get worse?

    I have Neurofibromatosis and so far I do not have it bad. The worst place I have it is my stomach. They're are just little bumps. Thankfully I only have one on my face it most people don't notice it. How old were you when this disease progressed to a point where you didn't want to go outside. I fear that it will get worse. I just hope I am one of the lucky ones and this is as bad as it gets.

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    Old 01-20-2015, 01:37 PM   #2
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    Join Date: Jan 2015
    Posts: 10
    Lieu HB User
    Re: When will it get worse?

    It won't necessarily get worse.

    I have NF, my daughter has it, my sister and brother have it, my father has it, my cousin and her son have it, her mother had it, my nephew and niece have it.

    My sister and father had the most lumps, but they were mostly in the limbs.
    I have one fibroma on my forehead, and that gives me the most grief, one in my tush, and one in my stomach that I was only aware of when pregnant.

    From my understanding, it usually doesn't get worse after you are an adult - after your 20s. In women it may be affected by hormones.

    I wasn't ever actually diagnosed, I'm 57, and my parents just sort of told me one day after I had a virus of some sort and my glans were all swollen. They introduced it as "the Elephant Man's disease" (I nearly passed out).

    So I was in my 20s when I found out.

    My daughter is 21 and hasn't shown many signs at all. My niece and brother had scoliosis.

    G-d willing you will continue as you are, and it won't get worse.

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    Old 04-18-2015, 10:17 PM   #3
    Join Date: Apr 2012
    Location: Baton Rouge, Louisiana
    Posts: 4
    captcire HB User
    Re: When will it get worse?

    I didn't have issues until I was 28. My neurofibromas are mainly interior but in the last year I have noticed hundreds of small to medium sized bumps on my lower chest and upper belly. I don't like going shirtless because of the. It's not embarrassing to me I just don't like explaining what they are. I hope you end up with a mild case like my father. I am disabled due to the interior ones on my spinal nerves. Take care and God bless

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    neurofibromas, neurofibromatosis, progressive

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