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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 met deaf people. I met mute people. I met blind people. I met autistic people. I met people who have Asperger's Syndrome. I met people who are deaf and mute. I met people who are...
    loveismyfriend loveismyfriend 36-40, F 2 Responses 13 hrs ago

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    I have been on a combination of meds to treat pain in my bac, spasms in my back muscles, and an anti depressant . I have been doing this combo for around twenty years for a disease...
    boldtimer boldtimer 66-70, M 14 hrs ago

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    I came across this site reading everyone's stories feeling amazed about how I am not alone. I feel a little disappointed because everyone's stories are mostly or similarly the same...
    whyme96 whyme96 18-21, F 14 hrs ago

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    This is in regards to a friend of mine who suffers from carpel tunnel. In addition to this...it also seems like the muscle, tendon, etc. in his arm is calcifying making it feel...
    jlg813 jlg813 26-30, F 1 Response 20 hrs ago

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    Today, I was diagnosed with Duane Syndrome. After 17 long years of wandering what's wrong with me, and why my eyes are so different from other peoples', I finally have closure. I...
    katiebug7 katiebug7 16-17, F 1 day ago

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    Good evening! I have been diagnosed with Marfan Syndrome when I was three months old by an ophthalmologist in a hospital in Poland. I am now 6'2", after two cardiac surgeries and...
    sakrona sakrona 18-21, F 3 Responses 1 day ago

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    Just found out my 11 year old son has Asperger's syndrome. I have suspected for a while, and the reason it went undiagnosed for so long is because he is so academically gifted. In...
    SoShellyBye SoShellyBye 41-45, F 2 Responses 1 day ago

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    I don't know for sure, but I know it's not normal. How can you be so tired from nothing? And this condition is what makes me depressed. Like I can be perfectly normal and then...
    fcksociety fcksociety 22-25, F 1 day ago

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    It's hard to really do anything.. When your a minor and have no family support... What's the point
    Norial Norial 13-15, F 1 Response 1 day ago

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    Getting old fears me. True. I am shocked that i am no longer a teenager, but why is it like only my age increases? I feel like my mentality when i was a teenager is the same as i...
    blitzkrieg7 blitzkrieg7 22-25, F 3 Responses 2 days ago

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    Its kind of funny, all my life. Every girl I was ever the least bit interested in...was always taken or unavailable. I tend to get stuck on one girl for a while and not really feel...
    Jason947 Jason947 18-21, M 1 Response 2 days ago

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    Hi I am 17 and i was diagnosed January 2015 with POTS but we were almost certain for several months before. I am a junior in high school and I try not to let my condition keep me...
    mermaidmixi mermaidmixi 18-21, F 4 days ago

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    im in the early stages of carpal tunnel syndrome in my right hand. i dont wear a brace yet. i go through pain and numbness in my fingers. its kinda weird.
    noaht43 noaht43 41-45, T 4 days ago

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    Thick blood (also known as hypercoagulability, Antiphospholipids, and Hughes Syndrome) is a condition where the blood is more viscous (thicker and stickier) than normal. The...
    topcap2017 topcap2017 41-45, M 1 Response 4 days ago

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    So I have a question. For me, when I am about to faint, I become really incoherent. I forget what I am talking about, I say off the wall things, and I can barely walk straight. It...
    imstrongerthanyouthink imstrongerthanyouthink 18-21, F 5 days ago

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    There's the oldest There's the youngest There's the only boy And then there's me...
    DreamRiver DreamRiver 18-21, F 4 Responses 5 days ago

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    Another bout has struck me down, looks like another few days of severe rest. Lucky me(!)
    ProjectExperienceNameUser ProjectExperienceNameUser 26-30, M 5 days ago

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    I don't understand why they are subjecting me to this? They first suggested Turner Syndrome to me 2 years ago and referred me for yet more bloodwork on my hormones - the laugh of...
    LoneSouls LoneSouls 31-35, F 6 days ago

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    i have several mental illnesses. i have been hospitalized many times and in rehabs. i take medication every day. i hate stigma and discrimination. it is wrong. i have...
    sunriseinmyeyes sunriseinmyeyes 31-35, F 1 Response 6 days ago

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    Broken Heart Syndrome is real. SO happy I DiDN'T GET THAT! But I was HEARTBROKEN for MANY, MANY months. It took another guy to help me forget and keep me distracted but that dude...
    endlessl0ve endlessl0ve 26-30, F 2 Responses a week ago

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    Any way to stop feeling fatigued? Anyone had any luck gaining energy back?
    WhiskeyT WhiskeyT 22-25, F 1 Response Feb 2

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    I'm only 4' 1. I have hypo pituitary syndrome. I stopped growing when I was about 11. I really hate it too.
    meneme2013 meneme2013 18-21, M 1 Response Feb 1

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    i'm 40 years old and have polands syndrome.i was always told that i just had a birth defect and that was it but finally a doctor diagnosed me.i was fine when i was younger but for...
    Brewdogg Brewdogg 36-40, M 1 Response Feb 1

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    Homeschooled my entire life I suck at Math Still don't have a driver's license (and haven't practice-driven since last summer) I missed out on pretty much everything cool in the 9...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response Feb 1

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    I have the pais syndrome an intersex condition. I am a FTM/Libragender and I have bottom dysphoria and I am happy though that I'm intersex, though worried too.
    Yviroc Yviroc 22-25, T Jan 31

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    Does anyone else experience a great feeling of anxiety and impending constant doom from this? Like something is terribly wrong...does anyone else feel this horrific panic deep in...
    myreality1 myreality1 36-40, M Jan 30

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    My husband and I have been trying to get pregnant for the past year. Nothing. I have two beautiful twin daughters. Natural conception, first pregnancy. I finally went to see a...
    Butterflykiss707 Butterflykiss707 22-25, F Jan 30

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    Is there anyone out there who has scleroderma of their organs? I now have it in my esophagus and lungs. Is this a death certainty. All I read is no cure and short life span. 3-5...
    jojosig jojosig 46-50, F Jan 28

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    I have had scleroderma of the esophagus for @ years now. I have woken up on respirators more than once. Now I have been told its in my lungs. I have Lupus and CREST. I feel like I...
    jojosig jojosig 46-50, F Jan 28

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    New low: as some of my friends may know, I was violently abused, raped and borderline tortured my my stepmother and stepsister following my fathers passing, and I left when I was...
    Nihl Nihl 18-21, M 1 Response Jan 26

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    My 10yo son has a missing right pec muscle, but no other symptoms of Poland. He's very sporty and it has made no difference to what he can do, in fact he has developed a huge...
    TKDmum TKDmum 41-45, F Jan 26

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    I have had this for at least two years. Always had insomnia and higher than average need for sleep, but when I started drinking I began to sleep later to avoid the hangovers. Add...
    tophertime22 tophertime22 18-21, M Jan 25

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    My name is Kristen Phelan and I'm a casting director working with Watercooler Casting. We are currently in development of a new TV project that is looking to document and bring...
    thekp129 thekp129 41-45, F Jan 25

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    I was born with it. This disorder has really changed my life. All my symptoms of it: ----I tend to be socially anxious at times, not know what to say, I am not very good at...
    RainbowBlaze RainbowBlaze 13-15 2 Responses Jan 25

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    Update on my pica syndrome. I have been clean for 6 months now and it's was very difficult for the first couple of months, but now the only time I crave uneatable things is when it...
    666x1 666x1 16-17, F Jan 23

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    Hello! I have Goldenhar but unfortunately my parents were told I had congenital atresia and microtia. After 14 surgeries as a baby, child, teenager and recently as an adult, I can...
    khaireng khaireng 36-40, F Jan 22

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    You know it doesn't matter if your a straight A student, never cause any problems, on a scholarship offering/grand champion team.... Your still less wanted... And can't get what...
    Norial Norial 13-15, F Jan 22

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    Ive had pica for about 8 years but it's been on and off. It started when I was 8.I smelled toilet paper in the cupboard and was immediately attracted to it.It smelt so amazing and...
    Savannah98 Savannah98 16-17, F 1 Response Jan 20

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    Hi there, I want to share an experience however it keeps getting deleted! It's quite long so yeh. Just wondering, anyone here from Sydney ?
    mrharticuz mrharticuz 22-25, M 2 Responses Jan 19

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