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I Have Trichorhinophalangeal Syndrome Type 1

A Trichorhinophalangeal Syndrome Type 1 anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Trichorhinophalangeal Syndrome Type 1. You're not alone. 4 People

    My Grandson Was Stolen...........

    In days gone by women married, had children and stayed at home and raised them while the men went off to work and made money to take care of the families needs.  It's only been in my generation that things changed.  My parents were dead set that I was not going to college...
    blutoo blutoo 51-55, F Mar 3, 2012

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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 1 day ago

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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 4 hrs ago

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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 1 Response 3 days ago

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    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

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    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

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

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    im self diagnosed i truly feel that i have it
    TomboyBeth TomboyBeth 13-15, F 1 Response 18 hrs ago

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

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    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

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

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    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

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    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 4 days ago

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    THE MORE THEY TELL ME THEY CAN'T HELP ME OR COMPLETELY IGNORE ME OR MY ISSUES, THE MORE I LOOSE FAITH IN HUMANITY AND MY FELLOW MAN. "DISCRIMINATION", IS A LIFE LESSON FOR A PERSON...
    JEM404 JEM404 41-45, M 1 Response 1 day ago

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    I have been a Type 1 Diabetic for 33 years now and on many occasions I have been told about Cures & Causes but yesterday while buying Blood Sugar Test Strips at a Local Chain I was...
    davidmuhn davidmuhn 46-50, M 1 Response Feb 20

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    I don't have a physical type, age has never mattered. it's always been about being able to have fun and being to make each other smile, and feel good and confident
    Techtonic Techtonic 26-30, M 5 days ago

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    Well I was the exact age I am now when I found out I had this disease. I didn't know I had it, I only knew that there was something wrong with me How did you find out about it? I...
    awsome2 awsome2 18-21, M 20 hrs ago

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    I've never had this experience before, where I "like" someone that I've met online. It's kind of weird, but in a good way. I'm really intrigued by him. He seems to have the same...
    Amd81491 Amd81491 22-25, F 2 Responses Feb 18

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    Does anyone have t CMT TYPE 1A with hypo tropic calve muscles (enlarged calves)?
    KaoriNyte KaoriNyte 26-30, F a week ago

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    I recently found out that my personality type is the INFJ. This is the rarest of the types. Gaining this information was one of the most enlightening experiences I've had. Now...
    RelayedDeaction RelayedDeaction 26-30, M 6 hrs ago

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    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

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    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

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    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

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    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

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    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

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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 1 day ago

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    Pretty much self explanatory. Additional info for the clueless: http://www.urbandictionary.com/define.php?term=White+Knight+Syndrome
    aberrations aberrations 22-25, M 1 day ago

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    Feeling lazy. Will paraphrase. Lots. The Myers-Briggs Type Indicator (hereby referred to as MBTI) is a pretty popular personality test people use to find out which one of only 16...
    GiantKaiju GiantKaiju 22-25, M 2 Responses Feb 5

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    The Type Of Girl I Am I'm the type of girl who will say I'm fine when my heart is breaking. I'm the type of girl who will say its fine, and its no big deal when I'm let down. I'm...
    HisLittleLady HisLittleLady 22-25, F Feb 7

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    I'm O type guy and I had a 4 year older success B type partner before.I never felt threaten and I was very happy when she made it.I always believe she should do whatever she want...
    rakkiseven rakkiseven 22-25, M Feb 20

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    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

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    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

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

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    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

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    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

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    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

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    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

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    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

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    Another Goodbye ButterflyI wish she wasn't so upset,when she left me,mad as she was when she left,but it's the only way she knows how leave me,believe me,I know the type,so...
    AaronLA AaronLA 31-35, M Feb 15

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    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

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    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

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    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...