Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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.

    Hello, My name is Mathilda Panzarella i have 17 years old and i'm a french girl so excuse me for my bad english.. I sign up on this social network, because since a long time, i...
    PanzarellaMathilda PanzarellaMathilda 16-17, F Jan 30

    Your Response

    Cancel
    Hello: My daughter has Parkes Weber Syndrome. I'm wondering if anyone in this group is from Ontario?
    Momofgirl Momofgirl 41-45, F Feb 5

    Your Response

    Cancel
    One year ago is when I started getting sick. It's started out as maybe an hour in the morning I would feel extremely nauseous and most of the time I would get sick and then go on...
    kateyrose98 kateyrose98 16-17, F Feb 9

    Your Response

    Cancel
    Asperger's is like a curse to me. I didn't ask to have panic attacks in cluttered noises. I didn't ask to not have a normal social. I CERTAINLY didn't ask to drag my family and...
    msvlogwars msvlogwars 16-17, F 2 Responses Jan 29

    Your Response

    Cancel
    my name is Ciara and I'm 19 and I am currently in the hospital post laminectomy. I have had back pain for about a year now. I had an inflamed SI joint that I recieved 3 steroid...
    cjacobs34 cjacobs34 18-21, F 2 Responses Jan 30

    Your Response

    Cancel
    I have it. Mayve yes or maybe no. I dont know but there are signs. Although I wasnt diagnosed coz going to a psychiatrist or something has a negative stigma in my place. When I was...
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 4

    Your Response

    Cancel
    Dear CFS: **** you! I hate not being able to think clearly. I hate not being able to play with my kids Saturday *and* Sunday. Instead, I have to pick one day and then use the...
    LookingForIt987 LookingForIt987 41-45, M 2 Responses Feb 11

    Your Response

    Cancel
    Hi, I'm 21. I slipped a disc in December 2014. I had CES symptoms for 2 weeks before having my disc removed as I was on a cruise ship. I guess I'm lucky as I can walk normally with...
    sdavis313 sdavis313 18-21, F 1 Response Feb 15

    Your Response

    Cancel
    Hi everyone! So I'll be posting my full story later but just wanted to do a short version. I'm 17 and was diagnosed in October 2014, they found out it was BCS after only being...
    Abbyrk Abbyrk 16-17, F 1 Response Feb 15

    Your Response

    Cancel
    I can't say 100% that I have this (just 98%) I wish I knew how to get better because I also have pseudotumor cerebri and the two are going in circles with each other right now...
    lu7998 lu7998 31-35, F Feb 16

    Your Response

    Cancel
    Hi I'm 24 years old and currently being diagnosed with pts. 5 months ago I had my first symptom which came out of no where and was severe! I have had sooo many tests as you would...
    megzeee megzeee 22-25, F 1 Response Feb 18

    Your Response

    Cancel
    As an Aspie, I get very tired having to socialize and talk to people. I'm often accused of being aloof, standoffish, or downright rude. It's not my intention to be mean or...
    Sorgun Sorgun 26-30, M 3 Responses 6 days ago

    Your Response

    Cancel
    I was born weighing two pounds and couldn't eat on my own. I wasn't eating food of any kind and was diagnosed with RSS when i was an infant. At first i was put on a N G tube (a...
    RTKDcarmichael1stdegree RTKDcarmichael1stdegree 18-21, M 1 Response 3 days ago

    Your Response

    Cancel
    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses 2 days ago

    Your Response

    Cancel
    Ugh. It's nearly midnight and my legs are still twitching and jumping. I've taken the meds, done all my stretches, taken aspirin, rolled on the foam roller. I'm so sleepy. It...
    Deedle623 Deedle623 51-55, F 3 Responses Jan 29

    Your Response

    Cancel
    Yes, and I've learned many ways about how to adapt to and around NTs. Contact me if you would like. :)
    wuiop wuiop 31-35, M 1 Response Jan 29

    Your Response

    Cancel
    social norms always confuses me. Still normal though. :)
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 1

    Your Response

    Cancel
    It's so tough to get exercise. I want to exercise so much...but I can't because it hurts and my joints pop every time i do:(
    Enpfor12 Enpfor12 18-21, F Feb 10

    Your Response

    Cancel
    i am aspie and i am proud of it. it makes me who i am and ucan all say like it makes some things i know i was diagnosed last year with this and high functioning augism and this is...
    prodemonz prodemonz 13-15, M 3 Responses 4 days ago

    Your Response

    Cancel
    My sister does, and I'm that sibling. I have asperger's syndrome, a form of high-functioning autism. When I was younger I would get angry at the littlest things. I remember...
    ftmFreddy ftmFreddy 18-21, T 1 Response Feb 9

    Your Response

    Cancel
    I am 16 years old and I have poland syndrome. I was diagnosed when I was old enough to sit up by myself, I have coped with this for a long time, I was promised my reconstructive...
    Blondiee137 Blondiee137 16-17, F 2 Responses Feb 1

    Your Response

    Cancel
    Quite a few, actually. Let's see: Velo Cardio Facial Syndrome Asperger's syndrome Depression Obsessive Compulsive Disorder That's me.
    ftmFreddy ftmFreddy 18-21, T 5 Responses Feb 9

    Your Response

    Cancel
    The ever present question, are we being manipulated? If you say, well yeah, duh. Then you ask yourself the next question, who is manipulating us? Welcome to the mind of all tin...
    everydayisagoodone everydayisagoodone 31-35 2 Responses Feb 13

    Your Response

    Cancel
    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 1 Response 1 day ago

    Your Response

    Cancel
    It's a little inconvenient and lonely, because when people come home from work, I'm just going to start my 'day' lol ;) the offices close, the shops/cafes closed at night so I...
    rainyrainsky rainyrainsky 26-30, F 1 Response Jan 30

    Your Response

    Cancel
    I was just diagnosed with Usher Syndrome on Wednesday. I've worn hearing aids my whole life. A little over two years ago I was admitted to the hospital for severe preeclampsia...
    AngieNickel AngieNickel 22-25, F Feb 1

    Your Response

    Cancel
    At long last I have I have a name and description for my inability to fall asleep till the wee small hours and I have made an appointment with a Sleep Disorder Doctor to confirm my...
    midnitemind midnitemind 70+ Feb 1

    Your Response

    Cancel
    I have a brother who has aspergers. It is very challenging as he had an atypical childhood and was unfortunately abused. I love him so much and wish for him to feel in control of...
    zen001 zen001 22-25, M 1 Response Feb 3

    Your Response

    Cancel
    Does anybody living in the uk have pots?
    emilysorrell emilysorrell 16-17, F Feb 7

    Your Response

    Cancel
    Hello. I have been experiencing symptoms for 6 months now and I was very recently diagnosed with Rumination Syndrome. I am on 20mg of Amnitriptolyn to help cure but there hasn't...
    minmouse614 minmouse614 26-30, F Feb 9

    Your Response

    Cancel
    I've missed 17 days this semester already and am very behind in school. Does anyone else have a really hard time keeping up? My mom says I can start homeschooling but not until I...
    TavynKeylee TavynKeylee 13-15 2 Responses Feb 10

    Your Response

    Cancel
    I have suffered with pica since I was a child. I eat drywall and I need to stop! now! I've tried everything, I take supplements, I try to find something less toxic to meet my needs...
    lilacgarden2015 lilacgarden2015 22-25, F Feb 12

    Your Response

    Cancel
    I got into a relationship with a man I thought was my soulmate, it happened online and he lived in a different state. He flew over twice and I flew to see him once. For 6 months...
    CosmicPrincess CosmicPrincess 26-30, F 1 Response Feb 14

    Your Response

    Cancel
    After 5 years of battling with POTS I have finally managed to stay healthy long enough that my doctor approved me for a volunteering program in South Africa! After years of wishing...
    haileybb haileybb 18-21, F 1 Response Feb 14

    Your Response

    Cancel
    HAVE ANYBODY EVERY STOPPED THIS COMPLETELY? ????
    toiletpapereatter toiletpapereatter 31-35, F Feb 19

    Your Response

    Cancel
    I am 31 and my husband is 31 as well?we are a gay couple? for the last 7 years My husband has been aware of his Aspergers Diagnosis and I, Have done a very extensive amount of...
    KnightOfTheMadHatter KnightOfTheMadHatter 31-35, M 6 days ago

    Your Response

    Cancel

    Your Response

    Cancel
    Hello. I am a 23 year old male, and this is my story that I want people to know. It all began back in my old home. My parents were great and wonderful parents to the eyes of the...
    familymaynotbeforever91 familymaynotbeforever91 22-25, M 3 Responses 3 days ago

    Your Response

    Cancel
    Hello everyone - I’m attempting to see if anyone living with Marfan’s would be interested in meeting, comparing notes, and just generally sharing support. Maybe we can all be...
    jasonandrew jasonandrew 41-45, M Jan 30

    Your Response

    Cancel
    My 13yr old daughter is an aspie .It runs on my husband's side of our family. He himself is an aspie so is his 17yr old son. Our 11yr old son has autism. It primarily has affected...
    Allie9273 Allie9273 41-45, F Feb 6

    Your Response

    Cancel
    Does anyone live in the uk with pots?
    emilysorrell emilysorrell 16-17, F 1 Response Feb 7

    Your Response

    Cancel
    I shouldn't...but I do. I love my rapist. I remember it all... The cage The chains The ropes The bull whips The tears The blood The sweat The screams The sounds Your voice...
    Bigirl9889 Bigirl9889 16-17, F Feb 15

    Your Response

    Cancel
    So I've always found myself a bit odd. Now I understand some of that.
    CDragontamer CDragontamer 31-35, T Feb 17

    Your Response

    Cancel
    I use to eat couch cushions and that started around 5years old, i dnt knw why but that lasted for 16 years, ,but now I've stopped and got a new best friend ,Toilet paper for two...
    toiletpapereatter toiletpapereatter 31-35, F Feb 19

    Your Response

    Cancel
    Yeah, I pretty much believe that everything I do has been created in my mind and my own conscious awareness. The people I come in contact with aren't truly there unless I hear from...
    AscherLukasValentine AscherLukasValentine 16-17 2 days ago

    Your Response

    Cancel