Post

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 learned only a few years ago that I have Asperger's Syndrome and am clumsy as well as frequently speak very wierdly sometimes, and am socially awkward. I am also narrow minded in...
    Fenrirfenn Fenrirfenn 18-21, M 4 Responses Jul 3

    Your Response

    Cancel
    I have Russell silver syndrome. It has given me health problems,I am way under the average weight for a normal 15yr old, I am 4'9 and will no longer grow.
    EvaJL EvaJL 13-15, F Jul 13

    Your Response

    Cancel
    I've just found out today I have Carpal Tunnel Syndrome .. it's hard for me to participate in Color Guard ..and soon I feel like I would have to stop ..bc the pain is crucial
    lynn1497 lynn1497 16-17, F 4 days ago

    Your Response

    Cancel
    23+ years ago I was diagnosed with MS, even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match...
    bonsaigirl bonsaigirl 56-60, F Jun 29

    Your Response

    Cancel
    **** I get when I tell someone I have aspergers "But you’re nothing like ____!"
Sometimes I’ll tell someone I have aspergers and they’ll just happen to have a friend or...
    nikkianni nikkianni 13-15, F 4 Responses Jun 29

    Your Response

    Cancel
    I feel like my universe is just so out of alignment.....everything i have known for so long is just not there anymore :0(
    itswonder4all itswonder4all 41-45, F 3 Responses Jun 30

    Your Response

    Cancel
    Hello im Amiee i'm 17 going on 18 on July 20th you may have remembered my mothers post Cheryl about my condition. I am still having the hip pain in both my hips. I had the MRI of...
    KiraAyita KiraAyita 16-17, F Jun 30

    Your Response

    Cancel
    It has been seven weeks since I woke with severe ear pain. I had a few weeks of dizziness and what seem to feel like water in my ear before that. I went to ER later that day...
    ksrooney ksrooney 56-60, F Jul 1

    Your Response

    Cancel
    I was diagnosed with TTS when I was 24, but my symptoms really started when I was about 21. I am currently 29. It always felt like I was walking barefoot on gravel, no matter what...
    happymegwv happymegwv 26-30, F Jul 8

    Your Response

    Cancel
    It's the reason 95% of everyone I have ever known has eventually pushed me away. I'm not trying to sound like a pity party but that's been my real world experience. I'm lonely...
    KusanagiShiro KusanagiShiro 26-30, M 4 Responses Jul 10

    Your Response

    Cancel
    I have EDS and chronic joint pain. I also have Tendonitis. I wonder if my Tendonitis has anything to do with my EDS.
    elenanicole elenanicole 16-17, F Jul 11

    Your Response

    Cancel
    I was diagnosed with Asperger's when I was 16, because the school nurse recommended that I get tested for AS. My teachers thought I was [pause] different. When somebody says you...
    RazorKenny RazorKenny 26-30, M 2 Responses Jul 13

    Your Response

    Cancel
    I think I have Asperger's. I have been diagnosed with many disorders over the years, depression, anxiety, ocd, ptsd, and we have touched on Asperger's, but never has it been a...
    13thgen 13thgen 36-40, M 2 Responses Jul 16

    Your Response

    Cancel
    Five different specialists have now told me I should start taking my medication now. Actually it could be six or seven but I don't want to. It isn't going to cure me.
    Teab Teab 41-45, M 2 Responses 6 days ago

    Your Response

    Cancel
    I was recently diagnosed in December 2013. I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo...
    CatFlag CatFlag 31-35, F 1 Response 5 days ago

    Your Response

    Cancel
    I've had depression and anxiety pretty much my whole life, leading to two hospital stays in my late teens. At that stage it was suspected to be some sort of psychosis, or...
    BJH72 BJH72 41-45, M 4 hrs ago

    Your Response

    Cancel
    Something I am having increasing difficulty with at the moment is that nobody knows exactly how difficult things are for me. This includes myself. I don't know how easy...
    Teab Teab 41-45, M 1 Response Jun 29

    Your Response

    Cancel
    My autism ruined most of my life. I wish I could relive as an autistic anthro fox
    Miserablechildhood Miserablechildhood 13-15, M 4 Responses Jun 29

    Your Response

    Cancel
    I was just diagnosed this week. Now what?
    VBLOVE1106 VBLOVE1106 22-25, F 3 Responses Jul 5

    Your Response

    Cancel
    my parents didn't tell me until i was eleven years old, so i found it a big shock. i spent my whole life thinking i was your usual normal-person-without-any-major-challenges...
    hans13 hans13 51-55, F Jul 5

    Your Response

    Cancel
    NO ONE CARES ABOUT ME !! I WISH MY YOUNGER BROTHER WAS NEVER BORN THEN I WOULD NEVER BE SAD AND CRYING RIGHT NOW😭😭😫😭😭😭😫😢
    bela5562 bela5562 13-15, F 3 Responses Jul 6

    Your Response

    Cancel
    Ugh. Joint pain is so bad when it rains. I just want to wrap up in a huge heating pad.
    ImBatmanNow ImBatmanNow 51-55, M 1 Response Jul 7

    Your Response

    Cancel
    Sometimes I wonder what my family thinks with me having Asperger's or how long they've been keeping it from me. When I found out in February, my mom confessed to knowing I had it...
    kelseytoby kelseytoby 16-17 2 Responses Jul 8

    Your Response

    Cancel
    I had what I thought was piriformis until it became chronic, simultaneous with my toes becoming restless. That sounded more like RLS. Then I had an inspiration and started wearing...
    echinoderm echinoderm 51-55, M 5 days ago

    Your Response

    Cancel
    I've wondered it for quite a while, I do suffer from Generalised Anxiety Disorder so there's a bit of me that think it's more than that than CFS. I tend to ache all over on a...
    Reallifeperson Reallifeperson 22-25, M 14 hrs ago

    Your Response

    Cancel
    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M Jun 29

    Your Response

    Cancel
    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M 1 Response Jun 29

    Your Response

    Cancel
    I have Oral Allergy Syndrome
    n0ceur n0ceur 18-21, F Jul 7

    Your Response

    Cancel
    I have Oral Allergy Syndrome. For those who aren't aware of what it is; it basically means that I can't eat raw fruits or vegetables, or else I'll succumb to an itchy mouth/throat...
    n0ceur n0ceur 18-21, F Jul 7

    Your Response

    Cancel
    Hi, im Hollie im 14 and I've had Duane syndrome since I was born. Because of my Duane syndrome it means I can't move my left eye at all to the left. This really annoys me because...
    HMace HMace 13-15, F 1 Response Jun 30

    Your Response

    Cancel
    Hello! I'm Kristina, I'm 18 years old. In February this year I was diagnosed Swyer syndrome. Although I'm trying to get used to require me to help people who know I'm going through...
    kika96 kika96 18-21, F 2 Responses Jul 8

    Your Response

    Cancel
    For about a year I've been considering divorcing my wife of nearly 8 years. Our relationship has never been great. We are great friends, but horrible lovers/spouses. We do things...
    randomtiger45 randomtiger45 31-35, M 1 Response Jul 1

    Your Response

    Cancel
    My daughter is a little over one year old. ( I don't like talking in months)She has Down Syndrome. I don't treat her differently from my other kids. Her needs are a little...
    Kryzta Kryzta 26-30, F 1 Response Jul 8

    Your Response

    Cancel
    My husband has Asperger's Syndrome. I am having a difficult time with our marriage. We have been married two years. He is a good provider and has good traits, such as being...
    Solfeggio Solfeggio 36-40, F 4 Responses Jul 11

    Your Response

    Cancel
    Interview with Nancy Garcia – Psychic, Paranormal Experiencer By Paul Dale Roberts, HPI Esoteric Detective HPI (Hegelianism Paranormal Intelligence) International https://www...
    PaulDaleRoberts PaulDaleRoberts 51-55, M Jul 19

    Your Response

    Cancel
    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response 4 days ago

    Your Response

    Cancel
    Over a year ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me...
    heyycutie16 heyycutie16 18-21, F 3 Responses Jul 13

    Your Response

    Cancel
    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 Jul 1

    Your Response

    Cancel
    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 1 Response Jul 1

    Your Response

    Cancel
    In 2011 I gave birth healthy beautiful baby. She was perfect and I loved her from the first time I saw her beautiful curly mop on her head and that chubby little face. As a mother...
    SweetAlibis SweetAlibis 26-30, F Jul 8

    Your Response

    Cancel
    NOT THE DRUG The syndrome Anybody on here who has it to?
    theweirdestofthemall theweirdestofthemall 13-15, F Jul 8

    Your Response

    Cancel
    Calling all POTsies! Follow my POTs story to see how i have coped and have found my remedies. I am sure it is helpful! check it out. www.potsisthepits.com
    cassidybute cassidybute 18-21, F Jun 29

    Your Response

    Cancel
    Hi When I was pregnant 5 years ago I had this urge for rubber, the smell and taste of it! All through my pregnancy I chewed on rubber bands, I then found it wasn't enough so I...
    Louloub1969 Louloub1969 41-45, F Jun 30

    Your Response

    Cancel
    So I do not have Lupus, but I was wondering if anyone could give me a little bit of feedback. I went to a neurologist a few years ago for muscle twitching everywhere. He...
    Anxiousgirl13 Anxiousgirl13 18-21 1 Response Jun 30

    Your Response

    Cancel
    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

    Your Response

    Cancel
    I've always suffered from SSS and Misophonia since I was very young. Recently it's gotten very difficult for me. I have been getting over whelmed or over come with feelings and...
    Danicakes9 Danicakes9 13-15, F Jul 1

    Your Response

    Cancel
    I'm the second child of the family. I have an older brother who is a year older than me & a younger sister 8 1/2 yrs. younger than me. I can't say my parents are bad but I've been...
    Cfil26 Cfil26 18-21, F 1 Response Jul 1