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Adreno leuko dystrophy

hopankahopanka member
in Special Needs
Does anyone have any info how I can help a friend who just recently got this dx for two out of three of her kids? The seven year old is showing symptoms and the two year old is asymptomatic, but confirmed. Thank you!
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Re: Adreno leuko dystrophy

  • Ginlyn0Ginlyn0 member

    I only know of that it was the basis for the movie Lorenzo's Oil.

    DD(14),SD(13),SS(11),SS(9),DS(3)

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  • Assembly_ReqdAssembly_Reqd member
    I just Facebooked a friend of mine who also has two sons with leukodystrophy. I do not think they have Adreno though, since they have shown signs since birth. I will let you know if she wants to hook up with your friend.
    WAY 2 Cool 4 School


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  • hopankahopanka member
    They live in the Czech Republic. They have spent a small fortune on Lorenzo oil only to be told by another Dr that it's useless. The youngest would need a transplant, however the Czech Drs refuse to do it on a two year old. She is researching a hospital in Minnessota that may allow the surgery to go through. It seems like they're being pulled every which way and no clear answers are being given.
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  • Assembly_ReqdAssembly_Reqd member
    I don't think my friend would be much help then.....Her kids issues are pretty stable and are non-degenerative....
    WAY 2 Cool 4 School


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  • Assembly_ReqdAssembly_Reqd member

    She has respectfully declined, mainly because it would not be a good fit. Here are some links she sent to me.

    If they don't know about it already, they could contact the United Leukodystrophy Foundation. www.ulf.org
    There may be people there who can offer advice/encouragement/answers. There is also a website: Inspire.com that has a ULF support group. There seems to be a lot of talk about Adrenoleukodystrophy.
    https://www.inspire.com/groups/united-leukodystrophy-foundation/

    Hope these are helpful.

    WAY 2 Cool 4 School


    image
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  • hopankahopanka member
    imageAssembly_Reqd:

    She has respectfully declined, mainly because it would not be a good fit. Here are some links she sent to me.

    If they don't know about it already, they could contact the United Leukodystrophy Foundation. www.ulf.org
    There may be people there who can offer advice/encouragement/answers. There is also a website: Inspire.com that has a ULF support group. There seems to be a lot of talk about Adrenoleukodystrophy.
    https://www.inspire.com/groups/united-leukodystrophy-foundation/

    Hope these are helpful.

    These seem to be exactly what she may need to find useful info and support. I forwarded both links to her. Thank you very much!!

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