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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 hate this time of year. Especially due to Valentine's Day. Seeing so many things out on, of different types and I can't do anything but send a card. Hate it so much. Yet love my...
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    What you choose to think about and dwell on in this life will make or break you as to what type of person you will end up becoming in this life. A negative mind, never brings...
    Grace2U Grace2U 66-70, F 7 hrs ago

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    My dad has CF and was given till about 13 to live when he was born because there weren't many medicines in those days for it. Now days the life expectancy for someone with his...
    AnonymousKCQ AnonymousKCQ 22-25, F 14 hrs ago

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    I'm 33yrs old, I was born with bi-lateral sprengels. Born to a family which didn't have much $, and having a deformity that's rare I went undiagnosed until a year ago. As a child...
    TrisCat TrisCat 31-35, F 1 Response 15 hrs ago

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    I came across this site reading everyone's stories feeling amazed about how I am not alone. I feel a little disappointed because everyone's stories are mostly or similarly the same...
    whyme96 whyme96 18-21, F 1 Response 1 day ago

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    Today, I was diagnosed with Duane Syndrome. After 17 long years of wandering what's wrong with me, and why my eyes are so different from other peoples', I finally have closure. I...
    katiebug7 katiebug7 16-17, F 2 days ago

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    Good evening! I have been diagnosed with Marfan Syndrome when I was three months old by an ophthalmologist in a hospital in Poland. I am now 6'2", after two cardiac surgeries and...
    sakrona sakrona 18-21, F 3 Responses 2 days ago

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    Just found out my 11 year old son has Asperger's syndrome. I have suspected for a while, and the reason it went undiagnosed for so long is because he is so academically gifted. In...
    SoShellyBye SoShellyBye 41-45, F 2 Responses 3 days ago

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    It's hard to really do anything.. When your a minor and have no family support... What's the point
    Norial Norial 13-15, F 1 Response 3 days ago

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    Getting old fears me. True. I am shocked that i am no longer a teenager, but why is it like only my age increases? I feel like my mentality when i was a teenager is the same as i...
    blitzkrieg7 blitzkrieg7 22-25, F 4 Responses 3 days ago

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    Hi I am 17 and i was diagnosed January 2015 with POTS but we were almost certain for several months before. I am a junior in high school and I try not to let my condition keep me...
    mermaidmixi mermaidmixi 18-21, F 5 days ago

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    im in the early stages of carpal tunnel syndrome in my right hand. i dont wear a brace yet. i go through pain and numbness in my fingers. its kinda weird.
    noaht43 noaht43 41-45, T 6 days ago

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    Thick blood (also known as hypercoagulability, Antiphospholipids, and Hughes Syndrome) is a condition where the blood is more viscous (thicker and stickier) than normal. The...
    topcap2017 topcap2017 41-45, M 1 Response 6 days ago

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    Hi, im a new member to ep and i have cp. I have only had my diagnosis for around a year despite being born that way. I have the ataxic type of cp along with some athetoid features...
    cinderellas2016eyes cinderellas2016eyes 22-25, F 4 Responses 6 days ago

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    So I have a question. For me, when I am about to faint, I become really incoherent. I forget what I am talking about, I say off the wall things, and I can barely walk straight. It...
    imstrongerthanyouthink imstrongerthanyouthink 18-21, F 6 days ago

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    I am a 43 year-old female of Central Mexican and Irish heritage. I was diagnosed with BTM at 19 while on Amphoteracin-B treatment for a fungal infection in my sinuses. Ampho-B...
    AZDawn AZDawn 41-45, F 6 days ago

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    I don't understand why they are subjecting me to this? They first suggested Turner Syndrome to me 2 years ago and referred me for yet more bloodwork on my hormones - the laugh of...
    LoneSouls LoneSouls 31-35, F a week ago

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    i have several mental illnesses. i have been hospitalized many times and in rehabs. i take medication every day. i hate stigma and discrimination. it is wrong. i have...
    sunriseinmyeyes sunriseinmyeyes 31-35, F 1 Response a week ago

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    I am INFJ. I've taken the test a few times to make sure. The whole concept of the 16 personality types is interesting to me--really made me think.
    Kinnick Kinnick 18-21, M 2 Responses a week ago

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    My blood type is B positive.
    1AngelHeart 1AngelHeart 46-50, F a week ago

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    My blood type is O positive...
    RocknRollCowboy71 RocknRollCowboy71 41-45, M 2 Responses a week ago

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    INFP is my personality type.
    InquisitiveFascination InquisitiveFascination 41-45, F Feb 3

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    Broken Heart Syndrome is real. SO happy I DiDN'T GET THAT! But I was HEARTBROKEN for MANY, MANY months. It took another guy to help me forget and keep me distracted but that dude...
    endlessl0ve endlessl0ve 26-30, F 2 Responses Feb 3

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    i'm 40 years old and have polands syndrome.i was always told that i just had a birth defect and that was it but finally a doctor diagnosed me.i was fine when i was younger but for...
    Brewdogg Brewdogg 36-40, M 1 Response Feb 1

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    Homeschooled my entire life I suck at Math Still don't have a driver's license (and haven't practice-driven since last summer) I missed out on pretty much everything cool in the 9...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response Feb 1

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    I have the pais syndrome an intersex condition. I am a FTM/Libragender and I have bottom dysphoria and I am happy though that I'm intersex, though worried too.
    Yviroc Yviroc 22-25, T Jan 31

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    Does anyone else experience a great feeling of anxiety and impending constant doom from this? Like something is terribly wrong...does anyone else feel this horrific panic deep in...
    myreality1 myreality1 36-40, M Jan 30

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    So things have been going good between me and the girl I met on Instagram, I found out we like alot of the same things and we've pretty much had to have the same type of heart...
    Jman5566 Jman5566 26-30, M 2 Responses Jan 30

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    My husband and I have been trying to get pregnant for the past year. Nothing. I have two beautiful twin daughters. Natural conception, first pregnancy. I finally went to see a...
    Butterflykiss707 Butterflykiss707 22-25, F Jan 30

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    Is there anyone out there who has scleroderma of their organs? I now have it in my esophagus and lungs. Is this a death certainty. All I read is no cure and short life span. 3-5...
    jojosig jojosig 46-50, F Jan 28

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    I have had scleroderma of the esophagus for @ years now. I have woken up on respirators more than once. Now I have been told its in my lungs. I have Lupus and CREST. I feel like I...
    jojosig jojosig 46-50, F Jan 28

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    New low: as some of my friends may know, I was violently abused, raped and borderline tortured my my stepmother and stepsister following my fathers passing, and I left when I was...
    Nihl Nihl 18-21, M 1 Response Jan 26

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    My 10yo son has a missing right pec muscle, but no other symptoms of Poland. He's very sporty and it has made no difference to what he can do, in fact he has developed a huge...
    TKDmum TKDmum 41-45, F Jan 26

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    I have had this for at least two years. Always had insomnia and higher than average need for sleep, but when I started drinking I began to sleep later to avoid the hangovers. Add...
    tophertime22 tophertime22 18-21, M Jan 25

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    My name is Kristen Phelan and I'm a casting director working with Watercooler Casting. We are currently in development of a new TV project that is looking to document and bring...
    thekp129 thekp129 41-45, F Jan 25

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    I was born with it. This disorder has really changed my life. All my symptoms of it: ----I tend to be socially anxious at times, not know what to say, I am not very good at...
    RainbowBlaze RainbowBlaze 13-15 2 Responses Jan 25

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    Update on my pica syndrome. I have been clean for 6 months now and it's was very difficult for the first couple of months, but now the only time I crave uneatable things is when it...
    666x1 666x1 16-17, F Jan 23

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    Hello! I have Goldenhar but unfortunately my parents were told I had congenital atresia and microtia. After 14 surgeries as a baby, child, teenager and recently as an adult, I can...
    khaireng khaireng 36-40, F Jan 22

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    I don't know why, but I always seem to be a magnet for married men. I've had many who would flirt with me online and offline. I've also notice when I go places by myself, I would...
    CaliTexan37 CaliTexan37 36-40, F 2 Responses Jan 22

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