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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'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F 2 days ago

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    Hey All, I'm a 28 year old female with what I think is CVS. Every few months I am awoken in the middle of the night with the worst stomach ache in the centre of my abdomen and I...
    starjj starjj 26-30, F 1 Response Dec 7

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    I was diagnosed with HAS a few days ago - The initial cause was that I am experiencing eye issues and saw an ophthalmologist who then referred me to a neurologist who made the...
    barbarasayshi barbarasayshi 41-45, F 1 Response Dec 13

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    So many people without it have no idea of the pain it brings along. Today, I'm meeting with the Lender for our new house, and I can't control the neck tics and I'm hurting on a 8...
    jeepers92 jeepers92 41-45, M 2 Responses Nov 22

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    I think I have Aspergers, I love arts so much I think it's the only life where I want to be, I love seeing great murals an architect designs, I can get obsessed and lost when I...
    perennialsorrows perennialsorrows 31-35, F 4 Responses Nov 27

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    I can't meet people's gazes. I have single minded focus on certain things. I am clumsy (found a way to help that.) I usually end a conversation just because I can't continue it, I...
    Ditum Ditum 18-21, M Nov 28

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    I thought I needed a good vent so here goes. Sorry if there is TMI. Every since I started my period when I was 11 I would be in excruciating pain, I would have to have time off...
    xxkerry1990xx xxkerry1990xx 22-25, F 1 Response Dec 2

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    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

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    I was finally diagnosed as being on the spectrum on November 2nd, 2014. The test used was the Gilliam Asperger's Disorder Scale and it was a three hour test done over three visits...
    lyricalongings lyricalongings 31-35, F 1 Response Dec 7

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    The doctor finally told me I have it a year ago but so far no one believes it. Looking to meet others who would like to talk about it.
    keravon keravon 51-55, M 1 Response Dec 8

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    I've tried to use it to my advantage. I'm gifted with writing and I believe Aspergers along with an abusive home environment help to give me that as well as other skills. Being...
    KnaisGuy KnaisGuy 22-25, M 3 Responses Dec 8

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    This **** is no joke. The pain is pretty severe. I plan on having surgery, but I have to wait till after Christmas.
    Xplictt Xplictt 22-25, M Dec 11

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    I've struggled all my life socially. I never made a single friend until I turned 14. I was always "that weird, quiet girl." People were cruel to me and I could never figure out why...
    SecretGaygent SecretGaygent 22-25, F 5 Responses a week ago

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    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

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    Has anyone else read the Michael Vey series of books. Kind of Awesome that TS has a champion. :)
    jeepers92 jeepers92 41-45, M Dec 10

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    The last time I was in hospital I remember a man being seen by a physician, the man was covered in blood. He had an entire roll of loo paper resting under his nose that was blood...
    heyitsabike heyitsabike 31-35, F 1 Response 2 hrs ago

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    I have a twin brother that survived Guillain-Barré Syndrome or GBS. He was diagnosed at the age of six and it took a year for him to get treatment and get over the disorder. GBS...
    tinytornado95 tinytornado95 18-21, F 1 Response Nov 26

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    I got diagnosed when I was 3 and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under...
    macyl macyl 18-21, F Nov 30

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    I have Hypermobility Ehlers Danlos Syndrome (EDS). I also have Postural Orthostatic Tachycardia Syndrome/dysautonomia (POTS). Ehlers Danlos syndrome is a connective tissue...
    jahoz jahoz 41-45 a week ago

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    I am well acquainted with how disruptive motherhood can be to a woman's personal and professional autonomy. I will not be waxing poetic about it either (today of all days). I too...
    Tannasheart Tannasheart 46-50, F 2 Responses 4 days ago

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    I was diagnosed with Duane Syndrome in my right eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital...
    baaraah baaraah 18-21, F Dec 5

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    I found out I had Duane Syndrome in both of my eyes when I was around 6 years old but it only started to seriously impact my life when I was 12. From what I remember my vision used...
    Ashleyc97 Ashleyc97 16-17, M Dec 12

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    Hi there. Since I was born I have been diagnosed with marfan syndrome. Little did I know, being an infant, I was on the verge of having many issues in life. They may not have been...
    ChrisSFTY ChrisSFTY 18-21, M 6 days ago

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    Yea, just as it says, I have Aspergers Syndrome. It's tough at times. Yea, I have a great understanding of logic but the fact I don't understand emotions. Nor do I understand and...
    Tnert357 Tnert357 18-21, M 2 Responses 1 day ago

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    Hello my name is johnny.......i was born with goldenhar syndrome.......i was born in mexico city where doctors their said that theirs nothing they can do.....so my lovely mother...
    johnnycash4814 johnnycash4814 26-30, M 1 Response 13 hrs ago

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    This experience message is for anyone who currently suffers from Hidradenitis Suppurativa (HS). PLEASE read my entire post before commenting, I have an EXTREMELY IMPORTANT and...
    starlits0ul starlits0ul 26-30 Nov 23

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    After 4/5 years of being called lazy when I feel too weak to move, or that it is all in my head, I was finally diagnosed with POTS yesterday. My parents aren't dealing with it well...
    anon1995 anon1995 18-21, F Nov 23

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    So, when we get our dogs as puppies, we're technically kidnapping them in a way, right? Since they have no inkling as to what is happening, to them it's kidnapping I suppose. (Or...
    LiveForAnotherDay LiveForAnotherDay 13-15, F 2 Responses Nov 24

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    Hi, Im new to this site, and anything like this. I recently found out that my BF, and as of last month, Husband has AS. I am not a Doctor, but he has all the characteristics and...
    Metalmissys Metalmissys 46-50, F 1 Response Nov 24

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    I don't remember a day where I actually felt normal. Could run. Didn't have my parents yell at me for "not controlling my symptoms". People asking why my legs are all red and...
    HebBay HebBay 18-21, F 1 Response Nov 24

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    It took the doctors almost 3 years to diagnose me. At first, they thought it was anxiety or depression. I was thrown around from hospital to hospital for about 2 1/2 years until a...
    Kristoe103095 Kristoe103095 18-21, F Nov 29

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    it was twenty four years ago when I had bouts of severe stomach pain. the kind of pain that would double you over. it was scary because I was pregnant at the time. I thought...
    regalshewolf regalshewolf 41-45, F 1 Response Dec 2

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    From the time that I was 7 years old, I have been medicated. I have been on 30+ drugs my entire life. First was Ritalin, that made me a walking zombie. From then on anti...
    sicknfaith83 sicknfaith83 31-35, F Dec 2

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    I was diagnosed with F84.5 ...... Asperger's Syndrome is an interesting foot note on the diagnostic scale of what is know 'autism spectrum disorder' a lot of harm was done when...
    Homejames Homejames 51-55, M 1 Response Dec 8

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    So I have this nice blue budgie that has recently been widowed (his green husband died). I believe the cause of death was curmudgeonly budgie syndrome. Truth is he was always a...
    Tannasheart Tannasheart 46-50, F Dec 9

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    Six years ago I broke my left foot. Nothing major, 6 weeks in plaster and then it will be ok. The cast came off, the bone had healed but the top of my foot was hyper sensitive to...
    barefootshirtless barefootshirtless 41-45, M Dec 9

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    Hi my name is Christina, I just found out I have pica. I have been licking cigarette ashes off of my finger. It started about 5 months ago while I was living with my ex. I was very...
    4cutiepies 4cutiepies 36-40, F Dec 11

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    Hi, I'm 43 and I think I have pica because I'm really addicted to eating ice and smelling washing powder. It's only one brand of washing powder I crave for(I'm not worried about...
    smurft smurft 41-45, F 5 days ago

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    At 14 he is presenting with some ridged exhausting repetitive, perseverant, behaviours. This is the first time I have felt pretty out of my depth managing his pathology. I am...
    Tannasheart Tannasheart 46-50, F 4 days ago

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    I wanted to share this. Envita Publishes Important Chronic Lyme Disease Treatment Study SCOTTSDALE, AZ--(Marketwired - December 16, 2014) - A revealing new study on chronic Lyme...
    mynameisjeff28 mynameisjeff28 26-30, M 3 days ago

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    A few days ago, I hurt so badly that I needed help to make it through the day, so I emailed the following to some of my closest friends. I hope and pray that each of you that has...
    UncleEkipS UncleEkipS 51-55, M 3 days ago

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    Recently diagnosed. Diagnosis seems a bit pointless seeing as there's no cure but I suppose it will stop me wasting my time looking for a solution. I wonder what to do with a life...
    Dontcare8 Dontcare8 26-30, F 1 Response 3 days ago

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    I think I have bursitis or greater trochanteric pain syndrome. The outside of my hip hurts SO BAD. Burning, aching, deep pain that I can't get away from. Sitting, standing, laying...
    CountryQueen623 CountryQueen623 18-21, F 4 Responses 1 day ago

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    I'm eating ice again. Yey? hahah, just wanna get that out there. Wrong info before, it's bad for your teeth.
    gnarlyaf gnarlyaf 18-21 Nov 23

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    My son has Asperger's. He is 6. I knew something was different from the time he was about 2. I love him so much but it is so hard. My older son is 13 and can't tolerate his brother...
    n2maynard n2maynard 26-30, F 1 Response Nov 29

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