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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.

    I am 15 years old I have Russell Silver Syndrome however the doctors did not diagnose me until I was 13 luckily I don't have all of the side effects however I am only 4'9 and...
    UNIJordanQUE UNIJordanQUE 13-15, F 2 Responses Sep 3

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    So about three weeks ago I got this odd pain that went from my neck into my left scapula area. I went to the chiropractor and had an adjustment. Felt somewhat better for just a...
    ornursetab ornursetab 41-45, F Sep 21

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    With help from my psychologist (who's very successful and specialized in autism, along with other things.) shed a light over a little something that I've been thinking about for a...
    MissClueless MissClueless 16-17, F 4 Responses Sep 14

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    Asperger's Syndrome has caused me many problems regarding social behavior (what i should, and shouldn't do). I screwed up today, and am really upset about it. Hopefully you guys...
    TyphlosionWolf TyphlosionWolf 18-21, M 1 Response Sep 20

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    I am a 28 year old mother of two young children and a wife. In February of this year 2014 I was rushed into surgery do to CES. The surgery took care of the back and right leg pain...
    korinne44 korinne44 26-30, F 1 Response Sep 17

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    12 months ago I got very serious pancreatitis caused by a vary rare hereditary condition that I have since found out I have called familial chylomicronemia syndrome or (FCS). (FCS...
    frog2000 frog2000 26-30, F 5 days ago

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    I've taken 2 clonzepam, and a Requip, and two aspirins. I have stretched and rolled on my foam roller. It's 2:00 am and it will not stop. So tired. Need to sleep.
    Deedle623 Deedle623 51-55, F 2 Responses Sep 5

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    I don't have episodes as much as I used to but now it's just 24/7 burning and pain. Will this ever stop?
    Cvsgirl1222 Cvsgirl1222 16-17, F Sep 9

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    have plans for tonight? well too damn bad! Your getting bruises, cuts, pulled muscles, and a nice concussion, enjoy!
    thetalkingmushroom thetalkingmushroom 18-21, M 1 Response Sep 11

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    People judge me a lot when they find out that I have Asperger's.
    AveryWeinstein AveryWeinstein 16-17, F Sep 21

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    I think I have Zollinger because it now takes me a LOT of Rabeprazole to suppress GERD symptoms
    RegHandford RegHandford 66-70, M 1 Response Sep 22

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    Apparently I have high functioning asbergers but low functioning autism..??? Confused!
    CheeseBomb500 CheeseBomb500 16-17, M 1 Response 6 days ago

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    The worse thing is the paralysis and not being able to be expressive anymore with my face. I used to have a lovely smile and now it's gone. I hope that it's temporary...It's been...
    istajam istajam 36-40, F 2 Responses 2 days ago

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    I have suffered with CVS my entire life, from age two to now (Im 17). Along the way I've learned how to cope and help my episodes. All these helpful tricks may work for you but are...
    Platinumryan Platinumryan 16-17 Sep 4

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    I was diagnosed at age 8 with Sjogren's (I am now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well...
    hollyphoenix92 hollyphoenix92 22-25, F 1 Response Sep 5

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    One of my more persistent tics is groping. If i notice, feel(like in a hug or brushing against me), or remember what they feel like, i have to grab a woman's breasts. I don't think...
    thetalkingmushroom thetalkingmushroom 18-21, M Sep 11

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    I have pcos and I'm SO upset about it. I'm 20 years old & I ready wanna have kids cause I'm scared it will take me forever to get pregnant anyways! I'm not overweight but I'm so...
    lovebarbiex0 lovebarbiex0 18-21, F 1 Response Sep 22

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    My sister has recently started to have severe vomiting that last up to 3-4 days, for two months. It correlates with her period. This time it was so bad she had to go to the ER...
    MissNinaBee MissNinaBee 31-35, F 5 days ago

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    Uncoordinated Somehow, I'm reluctant to get hit with a ball, bat, shoe, kid, or some out of the blue object when I walk into a school gym. Now every time I walk anywhere near...
    kelseytoby1337 kelseytoby1337 16-17 2 Responses Sep 2

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    Another terrible night. Why does it take nearly an hour for the requip and clonzepam to kick in? I will take them earlier, tonight, but they make me loopy. I tried pickle juice...
    Deedle623 Deedle623 51-55, F 3 Responses Sep 6

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    So, not many people know of this and I think it might be a good idea to raise some awerness. Albright is a generic defect or mutation that basically makes my bones weak. I get 1...
    shadow2233 shadow2233 18-21, M 2 Responses Sep 15

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    Its really annoying with the stupid spasms and twitches, and sometimes i can say bad stuff and it gets me in a lot of trouble :(
    RazorToMySkin RazorToMySkin 16-17, M 1 Response Sep 17

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    And today has been the most miserable day. I've never had it throughout the day before only at night, but the three hour drive back home I felt it the whole time. Trying a new...
    amcgarity amcgarity 22-25 Sep 21

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    The most frustrating thing is knowing that you know others don't. Followed by knowing they understand what you don't. Somedays I tire of faking emotion to be kind. I just wish...
    silkyavi silkyavi 31-35, M 1 Response Sep 22

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    When I was 26 year old I found out I got Klinefelter Syndrome I get a hormone testosterone needle every 12 weeks for the rest of my life.
    blackcat055 blackcat055 41-45, M 1 Response Sep 11

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    My twin brother has Down syndrome, along with many other problems, he can't talk clear, only we can understand what he's saying, I've heard people call him ugly, fat.. Short...
    Bflyboo14 Bflyboo14 13-15, F 2 Responses a week ago

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    When I was 12 years old I started having extreme headaches. My mom took me to the neurologist and they said I would grow out of them and didn't take my pain seriously. Later, it...
    WynonnaMarye WynonnaMarye 18-21, F 6 days ago

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    My mother was diagnosed with Guillian Barre Syndrome this past Aug. Since then she has lost all function from the neck down, including her mouth. She has been on a ventilator and...
    anthonykoryn anthonykoryn 36-40, F 19 hrs ago

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 1 Response Sep 2

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    Hello my name is Mark Miller. I was diagnosed with Klinefelters Syndrome when I was 4 years old. My parents knew something was wrong when I could not speak words until I was 7...
    Mark7Miller Mark7Miller 18-21, M 1 Response Sep 3

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    Hi my name is Jaime I am 29 years old and in 2006 I was diagnosed with a very rare kidney disease called Gittleman's Syndrome its so rare that not very many people in the United...
    GSwife1313 GSwife1313 26-30 Sep 4

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    Possible POTS?- This post is super long-sorry! (POTS towards end) Hi, I'm an 18yr old female from Australia hoping to get some help about my mystery illness! In January I...
    lilbg6 lilbg6 18-21, F 1 Response a week ago

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    Does anyone spike a fever when they have episodes?
    december789 december789 16-17, F 1 Response Sep 5

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    After being diagnosed and being put on a bunch of new medications, I gained 30 lbs in a matter of months. I was even eating healthier and trying to work out as much as I could...
    Samm86 Samm86 18-21, F 1 Response Sep 5

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    DSPS probably began for me in my teenage years. I didn't know what it was and had no name for it. Like many other people's experience with DSPS, it was assumed that I was lazy or...
    softgreenhourglass softgreenhourglass 36-40, M 1 Response Sep 9

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    I wish I could talk to my Aspie husband about the issues I have with our relationship, but as soon as I say anything, he gets so defensive and turns it back on me or becomes...
    TiffanyPerkins TiffanyPerkins 36-40, F 6 Responses Sep 9

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    I call my self an oddity. There are so many strange things about me i keep most of them hidden. Like my Pica. I told my mom once but we are mexican (she doesn't belive in Pica...
    mashuthanna mashuthanna 22-25, F 1 Response Sep 9

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    In my early teens around 2000, I created a Myspace account. This man named Chuck added me. Of course I was fine with it because he was into anime and manga and being a young teen I...
    dreaminginjune dreaminginjune 22-25, F Sep 9

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    For many years I have "craved" really-hot radishes. I buy up to 6 bunches per week, and somewhat panic when I run out before shopping day. I only stopped for a short time...
    Omma41 Omma41 70+, F Sep 10

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    Born with rate condition called kfs klippel feil syndrome they only operate I've been told on few people with condition if bad enough I had an operation on my spine was told they...
    aromantic2012 aromantic2012 31-35 1 Response Sep 11

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    I had a beautiful baby girl 8 weeks ago, my third via csection and also had a tubal ligation. I was feeling really good until about a week ago when I went to doctor and started...
    joce32 joce32 31-35, F 1 Response Sep 12

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    I HATE being so logical, but logically it's necessary and appropriate for people to think logically. See my problem? I don't love. Relationships make zero sense to me, I don't have...
    pianochick5254 pianochick5254 18-21, F Sep 15

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    I love looking younger .. I'll be 43 in oct and it's helps with old man syndrome lol
    Justted Justted 41-45, M Sep 18

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    Today I was at work while there was a meeting of my boss and the boss of the whole organization I work for. It`s a non-profit organization helping people with autism and Asperger...
    Mellangela Mellangela 26-30, F Sep 18

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    Currently, my husband is struggling with CVS (Cyclic Vomiting Syndrome). This is probably one of the most frustrating things for someone you love to have. He will be fine for a few...
    kristinap123 kristinap123 22-25, F 1 Response Sep 20

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    I might have to be homeschooled. My quality of life is gone as of now.
    december789 december789 16-17, F 1 Response Sep 22

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    I am married for 4.5 years, i met my husband in the other side of the world... i moved whit my two kids to him (this is my second marriage)... when we started living together i...
    TikaBuendia TikaBuendia 36-40, F 1 Response Sep 24