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I have come here for some support and maybe advice. My niece has just been diagnosed with Alstrom syndrome after she had been having different health problems for a few months. My question is, will she be OK? How can I support her? I am having a really tough time with this myself.

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May I ask how old she is? So I can give you the best advice to my knowledge.
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From what I have read so far about this disorder is there isnt a cure YET. They are researching right now. It doesnt look like it has killed anyone, but it does look like she will have a ruff life ahead. Some symptoms are loss of hearing and eye sight but they do have glasses and hearing aids for that part. Also rapid weight gain and weight loss, (try and keep her on a healthy diet). Veggies, fruit so forth. The only thing I can recommend is stay STRONG HEARTED for her bc she will have  hard patches now and then till they do find a cure. I also saw foundations for Alstrom Syndrome as well. See if you can find a support group or other people her age that has it so she wont feel like an outcast and she will know that shes not the only one!  :)

Sorry I couldn't be a big help :(  If you need to talk or have any more questions you can PM if you would like.

Best of Luck for you all!!!!!

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