Niemann-Pick

Posted by haydar @haydar, Fri, Sep 13 2:16pm

hello, I have a 4-month-old niece and they diagnosed Niemann-Pick, the spleen is constantly swelling and jaundice doesn't go away at all so we're very sad.

Hi @haydar and welcome to Connect. That must be so difficult to see you niece with this disease, as well as watch your sibling cope with this as a parent.

I'd like to share this link on Niemann-Pick that shares more about the disease: https://www.mayoclinic.org/diseases-conditions/niemann-pick/symptoms-causes/syc-20355887

I also would like to share this link to the Caregivers group on Connect, where you can meet others who are caring for loved ones: https://connect.mayoclinic.org/group/caregivers/

Back to you @haydar, you mentioned how you all are very sad. Are you comfortable sharing more? How have others, yourself included, been able to provide support to your niece's parents and the rest of the family?

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incurable bi They said that the disease, but father and mother do not believe it, I'm his uncle and other family we support them, when you look at all the mother and baby in pain, it's bi wants to believe that a cure, we live in turkey and come to the united states if the treatment really treating and baby What do we need for this?

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I was told that we were very lucky to have been diagnosed early, but they did not initiate any important treatment process, they were given white blood supplements, they gave medication named zevezka or maglustat. her belly swells all the time and she's getting unresponsive, we're really afraid,If I could send you the reports, could you pass it to Mr. Patterson?

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they also refused to take the drug zarezka now for severe symptoms, given if there is a neurological problem, white blood

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@haydar

they also refused to take the drug zarezka now for severe symptoms, given if there is a neurological problem, white blood

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@haydar, this community, Mayo Clinic Connect, is an online where people can share experiences and ask each other questions about any health issue.

It sounds like you would like to seek a medical opinion from Mayo Clinic experts. You can contact Mayo Clinic to get a second opinion about your nephew's condition and help his parents and send medical records. Please see the information about International Services at Mayo here: https://www.mayoclinic.org/departments-centers/international

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