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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 have Kleine Levin Syndrome, but I prefer calling it the sleeping beauty syndrome, it makes me more comfortable. I live in a very small town where no one knows about this...
    briannanicolex briannanicolex 18-21, F Mar 13

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    not me but my youngest son. we adopted him and his birth parents were drug and alcohol addicted. I am only just learning about this syndrome and the problems that my son will have...
    RobertaSunset RobertaSunset 36-40, F 8 hrs ago

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    All through my short life I have experienced the troubles of being an outcast, being told to simply "get involved" but that's not at all easy. Well not for me anyway. I can do...
    thedimone thedimone 13-15, F 6 hrs ago

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    I was known as the "Weirdo" during school. I have never had any real friends in my whole life until freshman year. Kids never wanted to play with me and called me "stupid" and...
    lollipopchick lollipopchick 22-25, F 7 Responses Mar 10

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    Hi my name is Edward, I was diagnosed with Russell Silver Syndrome when I was every young. I'm 18 now and about to go off to college. My whole life I have known about my...
    EdwardLayman EdwardLayman 18-21, M Mar 17

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    I don't know if because of the other medications I HAVE to take or what but I use Restasis every day twice a day like the frickin commercial says. I also take Fish Oil and...
    steverick steverick 56-60, M 1 Response Mar 3

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    Not sure what to think, 20 years old, for almost two years, I will wake up in the early hours with this intense pain, sweating, and know that I need to get to the toilet. I will...
    Ashlearyan Ashlearyan 18-21, F Mar 7

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    I'm seeing a specialist soon as they suspect i have ehlers-danlos hypermobility type. I just wondered if everyone who has it has the stretchy skin as i only have it mildly on my...
    bloodandfire91 bloodandfire91 22-25, F Mar 18

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    and I was wondering how else did? What are some tics you have and how do you manage them?
    zodiac1888 zodiac1888 18-21, M 6 days ago

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    When I was a kid I basically thought I was an alien because I felt so different the first language i learned was german but i was going to school with children whose mother...
    loafemon1 loafemon1 18-21, F 2 Responses 2 days ago

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    anyone here from the Uk who has it? finding the nhs not that helpful ty
    mysmugcat mysmugcat 41-45, F 8 hrs ago

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    Indeedly--makes effective communication a ***** I gotta say. And then there's the difficulty to quickly adapt, and sometimes people say stuff in a way that you just don't get and...
    Cryx Cryx 16-17, F 1 Response Feb 28

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    Pues aquí estoy, me acaban de diagnosticar esto, y fue como una gran patada... llevo ya mucho tiempo con cosas: depresión, crónica, cansancio,fatiga, herpes zozter, problemas en...
    AleCogh AleCogh 51-55, F Mar 10

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    People say "oh your lucky, I wish I could stay at home and not work" and I just want to slap them. Id give anything to be able to work again. Yes I'm home but I can't even help...
    Besillybeyou Besillybeyou 26-30, F 2 Responses Mar 17

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    This is true, one thing about it is an immense obsession with limited things, I was diagnosed a LONG time ago, most likely after preschool. My obsession is mental disorders, Two...
    deanratzloff deanratzloff 13-15 2 Responses a week ago

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    I have polycystic ovary syndrome. It mean my ovaries produce little and irregular eggs. This also means I miscarry, a lot. I’ve lost 7 babies and I am 21. You want to know why I...
    dakota4oneday dakota4oneday 18-21, F 5 Responses 4 days ago

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    My cousin, who is a doctor, talked to me a few days ago about my constant tiredness. The thing is I go to bed before midnight, I don't even remember when was the last time I made...
    delusi0nal delusi0nal 18-21, F 1 day ago

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    Hi call me Sean. I'm 21 years of age and I have Poland syndrome. I am missing my left pec muscle and it haunts me practically everyday. I feel as if I have I've become alittle bit...
    Life1sinteresting Life1sinteresting 18-21, M 2 Responses Feb 28

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    Don't give up; there is hope. I'm 19 and when I was 16, I got my first symptoms of rumination syndrome. Like a lot of others, I thought it was a 24 hour sick bug but it just...
    alexxblanch alexxblanch 18-21, F Mar 4

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    Hi I am a 20 year old girl in the uk. I was diagnosed with mosaic turners when I was born but I've never even thought about the condition that I have, it's never really effected me...
    MissLisac MissLisac 18-21, F 3 Responses Feb 27

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    just wondering about others experiences with POTS syndrome. I have lost all strength in my legs and im in a nursing home. Therapist says ill be in a wheelchair for a month. was in...
    Jzimo Jzimo 22-25, M Mar 1

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    i first found out i have turner syndrome when i was a babe my ma discovered i was on injection to help my growth i attend hospital evey six months but they have me in a adults...
    Atale Atale 18-21, F Mar 4

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    As a 16 year old girl, it's been a struggle to be a girl with polands syndrome, but luckily have had a great support system (both family and friends). Recently I have gotten my...
    hp6688 hp6688 18-21, F 1 Response Mar 7

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    I have Poland syndrome since I was born. I'm missing my right pec. I Struggled though school and when I left I sighed strait up for the army. I have found out that it is much...
    benheggarty benheggarty 16-17, M Mar 15

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    I strongly suspect that I have 47,XXY Kleinfelter Syndrome. I was diagnosed with Hypogonadism two weeks ago. I'm 38. Previously I thought my issues were solely due to varicoceles...
    mjxxy mjxxy 36-40, M Mar 15

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    I am 13 years old. I have been sick for around 10 months. It started as what appeared to be a stomach bug but has continued for months and months. They removed my gallbladder and...
    deleted deleted 26-30 3 days ago

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    I am 31 years old female and was diagnosed Guillain-Barré syndrome. I felt tingling weakness in my right leg and in few hours it started spreading to lower limbs and I realised...
    amishah154 amishah154 31-35, F 3 days ago

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    im self diagnosed i truly feel that i have it
    TomboyBeth TomboyBeth 13-15, F 2 Responses Mar 1

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    I'm looking for a little insight on Pica. I myself do not believe I have Pica but I believe my three year-old daughter does. Literally EVERYTHING she touches she tries to eat and...
    kasirae3192 kasirae3192 22-25, F 1 Response Mar 2

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    I have just ran across DSPS today in researching and trying to find out what exactly has been wrong with me for most of my life. I've classified myself as a night owl since I was...
    CrowWoman CrowWoman 51-55, F 2 Responses Mar 2

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    I work in customer service (phone and email). I have been told before that I put too much pressure on myself, and I agree that I do. But I just don't know how NOT to. Well...
    enigma19020 enigma19020 46-50, M Mar 3

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    its hard living with this condition im an eighteen year old girl living in Ireland i was a babe when my mother found out i didnt know anything about it i was in hostiple most of...
    Atale Atale 18-21, F 3 Responses Mar 4

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    I am 26 and have been struggling with pica for 20 years. When I was a kid (6 years old) I started to eat the stuffing out of couches. It started off as a little here and there but...
    keepitlikeasecret keepitlikeasecret 26-30, F 1 Response Mar 5

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    I recently have been diagnosed with POTS. I'm fifteen years old. I have not yet started treatment but I hope to soon. Some days its really hard to get out of bed, go to school...
    kater837 kater837 13-15, F 1 Response Mar 5

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    Ok, I'm trying so hard to overcome this. But my cravings r out of this world! I have to satisfy it today or I'm gonna lose it. I'm trying to find substitutes for the dirt and...
    yummytummy610 yummytummy610 41-45, F 4 Responses Mar 9

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    Hello, new to this whole "me too" thing. I wanted to join to share my story of what I've been experiencing so far. I'm also looking for anybody out there that can relate. I've been...
    stinaleigh365 stinaleigh365 22-25, F Mar 9

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    Until popeye syndrome returns.
    convertihd convertihd 46-50, M Mar 10

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    through out my whole life I have suffered from daily headaches, dizziness when I stand up, nausea/ stomach upset and constant fatigue I have been to multiple doctors and specialist...
    kristykaz121 kristykaz121 18-21, F Mar 10

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    I NEED HELP! My boyfriend of 7 months has aspergers (low on the spectrum i think). I have tried communication, i really have, but i wonder how much of it is his personality, and...
    misselenamasen misselenamasen 18-21, F 3 Responses Mar 11

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    okay so i have Pica and have had for as long as i can remember its the foam in couches and cushion stuffing that gets me, I have a young son and since me and his father split up...
    Danii2015 Danii2015 22-25, F 2 Responses Mar 11

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    I've been singing lyrics of a song for a whole day and for a long period of time. Driving me to absolute distraction. Ruining a bit of my concentration. And then, memory triggers...
    etten etten 31-35, F 1 Response Mar 14

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