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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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    I don't think I have pica syndrome or if it's just a nutrition deficiency but when I get a bath or something I sometimes have a chew on the sponge or something because I like the...
    lucymichelle lucymichelle 13-15, F 1 Response Sep 1

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 Sep 2

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    Wow!!! For as long as I can remember I have had cravings for weird non-eatable objects. I remember exactly when it started, I was about three my Mom and Dad had this ugly, green...
    RedVinekiss RedVinekiss 31-35, F Sep 3

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    When I was 26 year old I found out I got Klinefelter Syndrome I get a hormone testosterone needle every 12 weeks for the rest of my life.
    blackcat055 blackcat055 41-45, M Sep 11

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    My name is Kate. I live in Oscar, Louisiana. I started experiencing symptoms in November of 2012 while pitching in a softball game. It all started with right shoulder pain. I was...
    Katedebetaz Katedebetaz 13-15, F 2 Responses Aug 24

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    I am not sure if I am diagnosed or not. My dr said I have tietze but he never did any real test on me. But the problems I am having are the same as with tietze, so that's who he...
    zerudahima zerudahima 22-25, F 2 Responses Sep 4

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    Does anyone spike a fever when they have episodes?
    december789 december789 16-17, F Sep 5

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    I call my self an oddity. There are so many strange things about me i keep most of them hidden. Like my Pica. I told my mom once but we are mexican (she doesn't belive in Pica...
    mashuthanna mashuthanna 22-25, F Sep 9

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    For many years I have "craved" really-hot radishes. I buy up to 6 bunches per week, and somewhat panic when I run out before shopping day. I only stopped for a short time...
    Omma41 Omma41 70+, F Sep 10

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    I HATE being so logical, but logically it's necessary and appropriate for people to think logically. See my problem? I don't love. Relationships make zero sense to me, I don't have...
    pianochick5254 pianochick5254 18-21, F Sep 15

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    I might have to be homeschooled. My quality of life is gone as of now.
    december789 december789 16-17, F 20 hrs ago

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    My dad was recently diagnosed with MELAS. He is 48 years old. He has been in and out of the hospital due to seizures and what we thought were strokes. He suffers from hearing loss...
    ering08 ering08 22-25, F 1 Response Sep 1

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    I want to make a POTS group that meets once a week or once a month. Who lives In Wisconsin and has POTS?
    december789 december789 16-17, F Sep 10

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    Just got compression stockings. Not feeling this at all, they're super tight
    december789 december789 16-17, F 1 Response Sep 12

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    I've had it since I was 12. It's keeping me from performing everyday duties. Please pray for me.
    gratefulme gratefulme 22-25, F 6 days ago

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    Horrible day. Getting put on the 504 plan for school. These are the days when I wanna give up because I'll never be normal
    december789 december789 16-17, F 2 Responses 4 days ago

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    Going in an ambulance from the community hospital to children's. Forget POTS ;(
    december789 december789 16-17, F 9 hrs ago

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    looking for fellow chiarians! <3 *wear purple*
    Rielynnx3 Rielynnx3 18-21, F 4 days ago

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    My first hint that something wasn't right was walking back to our cruise ship with my daughter. I was having a hard time walking and thought maybe it was sciatica. I barely made...
    NixEgirl NixEgirl 56-60 1 Response Sep 7

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    anyone else? i read people with blood type B are proud and selfish! i am! if you have this blood type are you proud too??
    00roshana00 00roshana00 18-21, F 1 Response Sep 5

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    I took on a temporary job starting early February 2014, which required more typing than I had done since graduating college. I started having swelling and pain in my pinky joints...
    christinelinnet christinelinnet 22-25, F 1 Response Sep 3

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    Does anyone else have the same type of cancer?
    Steveduster4050 Steveduster4050 51-55, M Sep 8

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    So long story short , after a divorce , and moving , I have re fallen in love with my first love . He is my best friend . He is my comfort . He is the only man who will not judge...
    kstu1 kstu1 18-21, F Sep 8

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    Do men have a selective type of person they look at or check out at? I'm curious. I never do it but I'm still curious. In school there's a girl that wears a v-neck and shorts and...
    Artz4Life Artz4Life 16-17, F 5 Responses 4 days ago

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    Addiction runs in my family, in one form or another – typically many forms at once. On my bio mother's side, every person is addicted to many somethings. It was such a natural...
    Aurinne Aurinne 36-40, F 1 Response Aug 29

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    This is so hilarious and annoying at the same time. I must be a target for people phishing or similar type of defrauding, I've had since the start of September no less than 40...
    PoeticMute PoeticMute 31-35, M 3 Responses 3 hrs ago

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    In my early teens around 2000, I created a Myspace account. This man named Chuck added me. Of course I was fine with it because he was into anime and manga and being a young teen I...
    dreaminginjune dreaminginjune 22-25, F Sep 9

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    I cant cry when I'm by myself but in public I feel like I can break down any minute. Ugh. I'm cluttered. Fighting with parents, scared I have an std, got in a car accident and hurt...
    heartzs heartzs 16-17, F 8 hrs ago

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    Hello I'm kyle! 15, turning 16 in March, and I really want to find a boyfriend! (The one) but no luck :(. I'm really outgoing but a little shy, once I get comfortable I get really...
    kyleholusa kyleholusa 13-15, M 3 hrs ago

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    Just recently I began researching on middle child traits. I've found out that middle child syndrome is very real and it's not only me who suffers from it. Growing up, I have...
    123eat 123eat 22-25, F 1 Response Aug 24

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    And through Asperger syndrome, I met a good friend on this website. Since then, we have met in person and he and I are beyond best friends; we are true brothers and always will be...
    chubbystringbean chubbystringbean 22-25, M 1 Response Sep 1

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    I am 15 years old I have Russell Silver Syndrome however the doctors did not diagnose me until I was 13 luckily I don't have all of the side effects however I am only 4'9 and...
    UNIJordanQUE UNIJordanQUE 13-15, F 2 Responses Sep 3

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    With help from my psychologist (who's very successful and specialized in autism, along with other things.) shed a light over a little something that I've been thinking about for a...
    MissClueless MissClueless 16-17, F 3 Responses Sep 14

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    Asperger's Syndrome has caused me many problems regarding social behavior (what i should, and shouldn't do). I screwed up today, and am really upset about it. Hopefully you guys...
    TyphlosionWolf TyphlosionWolf 18-21, M 2 days ago

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    I used to really hate myself, I honestly did. But now, I'm happy I have what I have. When I was in elementary school, I never talked to anyone, I would walk around the playground...
    ThatRobotChick ThatRobotChick 18-21, F 4 Responses Aug 29

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    Hello my name is Mark Miller. I was diagnosed with Klinefelters Syndrome when I was 4 years old. My parents knew something was wrong when I could not speak words until I was 7...
    Mark7Miller Mark7Miller 18-21, M 1 Response Sep 3

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    Hi my name is Jaime I am 29 years old and in 2006 I was diagnosed with a very rare kidney disease called Gittleman's Syndrome its so rare that not very many people in the United...
    GSwife1313 GSwife1313 26-30 Sep 4

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    I am a 28 year old mother of two young children and a wife. In February of this year 2014 I was rushed into surgery do to CES. The surgery took care of the back and right leg pain...
    korinne44 korinne44 26-30, F 1 Response 5 days ago

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    So about three weeks ago I got this odd pain that went from my neck into my left scapula area. I went to the chiropractor and had an adjustment. Felt somewhat better for just a...
    ornursetab ornursetab 41-45, F 2 days ago

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    After my first bad concussion I became much more susceptible to them. Post concussion syndrome is terrible.
    Kingshelman Kingshelman 31-35, M 2 Responses Aug 25

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    I wish I could talk to my Aspie husband about the issues I have with our relationship, but as soon as I say anything, he gets so defensive and turns it back on me or becomes...
    TiffanyPerkins TiffanyPerkins 36-40, F 4 Responses Sep 9

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    The type that block when questioned. The type that stalk normies. The type that conspire. The type that wage crusades. Did Christ. No. Christ got mad at merchants...
    Livyn4pals Livyn4pals 46-50, M Sep 12

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    I love looking younger .. I'll be 43 in oct and it's helps with old man syndrome lol
    Justted Justted 41-45, M 5 days ago

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    I have had RLS for about 5 years. It started after I tore my hamstring from my sits bone. At first it was constant. I couldn't sleep, I couldn't stand in one place for long or...
    Deedle623 Deedle623 51-55, F 1 Response Aug 25

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    Please help! Could someone clarify whether my symptoms could be endometriosis? I have been ill for over a year now and though many other conditions have been ruled out by my GP, a...
    NattieC NattieC 22-25, F Aug 25

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    I have had bloating and gas, alternating with constipation and hemorrhoids, and was told I had irritable bowel syndrome, for several years now. in 2006, I went through some very...
    gastricwoman gastricwoman 51-55 Aug 30