I Have Potocki-lupski Syndrome

A Potocki-Lupski Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Potocki-Lupski Syndrome. You're not alone. 13 People

    My Son Has Ptls

    My son is two years old, and he is in the process of being diagnosed with Potocki-Lupski sysndrome.  He has experienced the low muscle tone and difficulty with eating/swallowing since birth.  Thanks to the help of a geneticist at a local children's hospital and the...
    verhasseltd verhasseltd
    36-40
    10 Responses Jul 9, 2008

    The Great Mystery Unraveled

    We are an Asian family and I have a daughter who was recently diagnosed with PTS. She is already 6 years old. I feel relieved that finally we know what we are facing but I am also scared of what kind of future she can have. She was born in Rome, Italy in 2003. This was a...
    loveconnection loveconnection
    36-40, F
    Oct 2, 2009

    Live Without Potocki Lupski

    Hallo, my Doughter is 4 Jears old and her name is Alina Marie .This Week we got the Diagnose that she has Potocki Lupski Syndrom. We come from Germany, and we are searching for someone who"s involved with this syndrom. We where happy about any informations about it. Greatings...
    AlinaMarie AlinaMarie
    36-40, F
    1 Response Mar 30, 2013

    My One Year Old Son Hat Ptls

    My son was diagnosed at 10 months with PTLS.  We have an apt. with Dr. Potocki herself this month.  Was wondering if any parents have any important questions that i should ask.  My husband and I will be traveling to see Dr. Potocki.  This is my fourth child...
    violetg violetg
    31-35, F
    1 Response Sep 9, 2009

    Our Daugther Has Just Been Diagnosed With Ptls

    Our daugther has just been diagnosed with PTLS. We are from Denmark (so pls. eksuse my english). Our daugther is adopted from China at the age of 10 month. Our daugther Anna turns 5 years in november. She has just a little duplication. She do not suffer from week musceltone or...
    eetvako eetvako
    41-45
    4 Responses Aug 11, 2010

    The Great Mystery Unraveled

    We are an Asian family and I have a daughter who was recently diagnosed with PTS. She is already 6 years old. I feel relieved that finally we know what we are facing but I am also scared of what kind of future she can have. She was born in Rome, Italy in 2003. This was a...
    loveconnection loveconnection
    36-40, F
    Oct 2, 2009
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