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I Have Pitt-hopkins Syndrome

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

    Could be me. Need to schedule an appointment and get assessed.
    Western9 Western9 36-40, M 1 day ago

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    I don't mind Aspergers. It has benefited my intelligence greatly, and I have a small group of friends who understand that I may not be the most entertaining or talkative person in...
    XenonVirus XenonVirus 13-15, M 2 days ago

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    Hate the empty nest. Use to have sons friends Ina bs out...so quite here. On a good note ...grocery bill has gone way down.
    sharipie sharipie 51-55, F 2 Responses 2 days ago

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    Im 25 years old and 100% have this, not that I have been formally diagnosed. I only found out about pica about two years ago but it explains everything. I seem to have cross over...
    terriberri15 terriberri15 22-25, F 3 days ago

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    Im 25 years old and 100% have this, not that I have been formally diagnosed. I only found out about pica about two years ago but it explains everything. I seem to have cross over...
    terriberri15 terriberri15 22-25, F 1 Response 3 days ago

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    Want to know me better? Autism is funny. And terrifying. (Just like EP really) Just now, as I sat reading a short passage of keywords about autism titled 'Am I OKay' I did my...
    jacquelinejones jacquelinejones 46-50 3 Responses 3 days ago

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    Ever since I could remember I've never been able to just fall asleep whenever. I sleep in soooo late, like 12:00 pm and I constantly get yelled at for it by my parents. I literally...
    saide33 saide33 13-15, F 3 days ago

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    I was diagnosed from my kidney doc after a Biopsy that I had sjogrens, but my Rhuemetologist says no ( I don't like him and am changing to a new one) I already have kidney disease...
    katsass katsass 46-50, F 5 days ago

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    and am glad there are others out there that have it too, because i'm not crazy.(At least not half as crazy as they were making me out to be)But...I would never, ever wish this...
    katiebabydoll13 katiebabydoll13 26-30, F 5 days ago

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    Im 16 and I struggle with Poland syndrome just as much as everyone else. I was fortunate in my case as I am only missing my right peck and an arm muscle. Other than that, I have no...
    FreeWilly04 FreeWilly04 16-17, M 1 Response a week ago

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    Does anyone else have obsessions? I get obsessed with men, like my trainer. It can make life hard.
    janie94 janie94 18-21, F Jun 24

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    I was diagnosed with Raynards in 1987 and then with CREST Syndrome in 1989. It was a scary time for me as my doctor called my whole family in and told them I has 3 to 4 years to...
    1990ppaul 1990ppaul 51-55 Jun 23

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    I found out in January, everything makes sense now. If only I could cope in a healthier way. I need more from my boyfriend, friends. I have no family. I'm all alone in a sea of...
    europaproxima europaproxima 22-25, F 1 Response Jun 23

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    I know a person can die from a broken heart (Broken Heart Syndrome ) and I wonder if a person can die from an empty heart?
    5catjenny 5catjenny 61-65, F 2 Responses Jun 22

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    Today I had an appointment with my primary care physician. I suspect that I have POTS. For almost 10 years I have been dealing with chest pain, shortness of breath, muscle pain...
    anewsyd anewsyd 26-30, F 1 Response Jun 22

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    Me and my mum clash! She thinks I'm attention seeking, needy and self absorbed. I resent my mum, she brought me into this world against my will, and she shows me no love. I...
    busybrain busybrain 26-30, F 2 Responses Jun 22

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    Daimyan is 9 and our journey began at his birth. He would like to ask everyone for support on a new support group on facebook. Search LUNAR to find it. Thank you
    LunarDayDay LunarDayDay 36-40, M Jun 22

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    I think a good male friend of mine may have Klinefelter syndrome. He fits many of the symptoms mentioned online including he is tall, a bit socially awkward, very wide hips and...
    pennyjd pennyjd 36-40, F Jun 22

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    FIRST I want to ask if any of you have had or thought about having surgery done to fix the webbed-neck and low hairline most of us are born with? I’m considering having it...
    CousinV CousinV 18-21, F Jun 21

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    This is my little 4 year old brother Sage. He is my best friend in the whole wide world. He loves to talk about numbers and the solar system. We have our nights where we go outside...
    ThatOneSomaliGirl ThatOneSomaliGirl 13-15, F 5 Responses Jun 21

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    Hi, I'm new to this. I've been eating toilet paper (obv clean) since I was around 10 years old. It started just odd sheet whilst in the bathroom, I didn't eat it consistently...
    Tiz1988 Tiz1988 26-30, F Jun 21

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    As a teen, I had ridiculously heavy menstrual cycles, so, at the suggestion of my doctor, I began taking birth control pills, and continued taking them until I was 25 and married...
    roswartz roswartz 31-35, F Jun 20

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    I've been fine for a while, but now I've started fainting a lot again. My mum and I were going to go shopping for my dads fathers day present, but because I will need a wheelchair...
    anon1995 anon1995 18-21, F Jun 20

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    Hey everyone! Thank you so much for sharing your stories! I am doing a research project on the practice of pica during pregnancy, and would love to interview anyone who is...
    snowflakesintown snowflakesintown 18-21, F Jun 20

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    Asperger's Syndrome in high school was tough. I didn't have a lot of friends and I was alone a lot but still hung out with a few peers. I remember being in the vocal club and band...
    AspieGirl97 AspieGirl97 18-21, F 4 Responses Jun 18

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    Hi I am Penny and have CVS. I've had it now for 2 plus years and am having a hard time dealing with it. It is so difficult to deal with right now, my life is on hold. Does it...
    PHowland PHowland 51-55, F Jun 18

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    I am 44 years old I have experienced Bi polar with mixed episodes, Mania and depression Anxiety and panic PTSD and Scizophrenia. never diagnosed but clearly have dealt with...
    smalltownwitch smalltownwitch 41-45, F Jun 18

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    hi, i am kiran and i have poland syndrome pretty fun say becoz recently i came to knw to that i'm suffering from it. All of my life till now i was wondering why is my right chest...
    kirankoundinya kirankoundinya 22-25, M Jun 17

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    Sometimes having Aspergers Syndrome sucks ****. I got diagnosed when I was a little girl. My dad said i was born with it. I guess I AM born learning disabled. Anyways, I didn't...
    ArtLover24 ArtLover24 22-25, F 1 Response Jun 16

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    I was diagnosed back in 2007 by my doctor.I have a hard time making friends and relationships last. They always leave me and i think i am not good enough.My anxiety is a daily...
    punkglampire punkglampire 22-25, F 3 Responses Jun 16

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    I have Aspergers not only that I also had speech problem. I didn't talk in full sentences till I was 5 years old. When I was in school it was hard for me to make friends because I...
    GuyFromTennessee GuyFromTennessee 41-45, M Jun 16

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    When I first got diagnosed with polycystic ovaries my first and instant reaction was to google the syndrome to find out as much as I could about disease I knew very little about...
    cocochanel92 cocochanel92 22-25, F 1 Response Jun 16

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    I probably have it too, based on the info I've studied. But I never got tested.
    GreenButtercup GreenButtercup 36-40, F Jun 16

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    I feel abnormal because I have Asperger's Syndrome which is high functioning autism. I dont have a whole LOT of friends because of it. I've been through depression, anxiety and so...
    AspieGirl97 AspieGirl97 18-21, F 9 Responses Jun 15

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    I probably have the most disgusting type of all: I eat boogers, and literally any bodily secretions except urine, feces, and menstrual blood. I used to be more omnivorous and ate...
    0902FRIENDs 0902FRIENDs 18-21, F Jun 15

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    Omg i have never heard that syndrome Vomiting is my phobia
    fauxlady fauxlady 22-25, F Jun 14

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    For the longest time I have had symptoms that doctors have seen and commented on, but NEVER taken the time to try to diagnose. In my own search for what is going on, I think I have...
    Vickichicki1 Vickichicki1 61-65, F Jun 14

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    We are dysfunctional as in we are all crazy together and are nothing alike. I have 4 kids ages ranging from 2 - 12. My oldest is Melanie who is 12. She is on the soccer team...
    leighcarson4 leighcarson4 36-40, F Jun 14

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    On March 18th 2013, it was my thirteenth birthday and I had maybe ten friends over. Before I'd gotten to the junk food, the cake or even dinner, my very first episode of abdominal...
    jennamorrison15 jennamorrison15 13-15 Jun 14

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    I worry very much of what will become of her, I have tried to make sure she can handle herself in most saturations or in case of attack even if more than one person was to attack...
    rickibrat2 rickibrat2 61-65, M 5 Responses Jun 13

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    I don't mean to complain but I have some problems but I don't mind living with. I have: egzama nethertain syndrome I can't really read that well I've been bullied cause I'm not...
    Lizandavan Lizandavan 13-15, F 1 Response Jun 13

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