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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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    Related Experiences

    ** I do not have Timothy Syndrome, my baby sister does, but she's too little to share her story ** My little sister was born a year and a month ago, premature. She was tiny and...
    allydoe allydoe 18-21, F 1 day ago

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    Hi, I was diagnosed with Limited Crest Syndrome around twelve years ago, having asked what it was I was told, too complicated, look it up on the internet....Anyway have the usual...
    gillybee77 gillybee77 66-70, F Nov 1

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    I eat every type of soap anyone I can get my hands on sometimes my tongue is yellow and I have really bad side pains but I cant stop. I eat a bar of soap a month n it relaxes me...
    semorec semorec 18-21, F 4 days ago

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    I have been self-diagnosed with rumnation syndrome and am 100% sure that I have diagnosed correctly. This syndrome is making me refuse to eat. I am disgusted with my subconscious...
    sassyanus sassyanus 18-21 Nov 3

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    Anyone else here have this illness?
    leyla29 leyla29 26-30, F 5 days ago

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    How to get a adult diagnosis for ASD (Asperger's Syndrome) ... Do your homework .. It's a complex subject . Talk to those who have been diagnosed . The internet is a good place to...
    Homejames Homejames 51-55, M Oct 22

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    WILL POWER. HAVING A POSITIVE ROLE, RESPECT, FUNDAMENTAL ETHICS ARE A GOD GIVEN RIGHT, SCARRY TO THINK SOME ARE LACKING...
    JEM404 JEM404 41-45, M Oct 24

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    Most people with Asperger's have co morbid's - mine is dyslexia - when I was being assessed for Asperger's I studied it intensely on the internet and I was great full to be able to...
    Homejames Homejames 51-55, M Oct 22

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    I was only diagnosed at 16. It's been really hard for me though. I nearly failed out of high school. I can't focus. And pretty much have all the symptoms that show I have it...
    yourbrowneye yourbrowneye 18-21, M 1 Response Nov 1

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    My whole life, I've been attracted to dry, dusty things. As a child, I used to volunteer to clean erasers at school so I could inhale the dust, but I never had a craving to...
    FaceFaceFace2 FaceFaceFace2 18-21, F Nov 9

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    Does anyone have anything other than POTS?
    december789 december789 16-17, F 1 Response Nov 10

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    I started having symptoms at age twelve but I had a complete brake down my junior year of high school. I was trying to balance high school, cosmetology school, and my pots symptoms...
    alyssaanna alyssaanna 18-21, F a week ago

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    I found out when i was 13 years old and found out i cant have kids i tried Treatments gels tablets everything nothing worked so i went to anabolic steroids like dbol and it was...
    chris0478 chris0478 22-25, M 2 days ago

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    Hmm lets see.. My aspergers was pretty bad back when I was younger, but I managed to learn how to simply read situations from facial changes. I still have trouble finding my own...
    oracnid oracnid 16-17, M 2 Responses 1 day ago

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    I've just gotten into toothpaste. I really want to eat it, but I have to control myself. Better get some gum, lol
    NatashaRose NatashaRose 18-21, F 2 Responses 1 day ago

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    I hate playing the waiting game. They found mine early b/c at the time they were checking up on my seizures And they just saw it. So now I just have to wait till I'm experiencing...
    Alisaperne6446 Alisaperne6446 18-21, F 18 hrs ago

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    What triggers episodes for you?
    december789 december789 16-17, F 1 Response Oct 25

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    I eat drywall. Well I did but I stopped I'm still craving for it but I don't eat it. this has been going on for about 3-4 years. I'm just curious could this effect my baby in the...
    byancax33 byancax33 18-21, F 4 Responses Nov 5

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    I'm pregnant and I loveeee to eat powder ! I tried to stop but I can't . Is there anyone like me ?
    BrokenGirl76 BrokenGirl76 18-21, F 2 Responses 5 days ago

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    I'm kyah and I'm 14 years of age I have distal arthrogryposis type 1 I have had 8 operations so far and more to come I just wanted to see if I can related to anyone :)
    kyah05 kyah05 13-15, F Oct 22

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    I know that we all have secrets and so surprised me to see so few people have joined this experience. That was my way of telling myself that I'm not a terrible person for what I'm...
    KelseyLeigh123 KelseyLeigh123 22-25, F 1 Response Nov 11

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    Ok... This is weird, because, I am an Afrikaans speaking person... Yet I have a British type of accent... No one in my school sounded like that and no one in my family sounds like...
    Qwert143 Qwert143 22-25 3 Responses Oct 23

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    I have a genetic collagen disorder, otherwise known as EDS. Not only do I have the hypermobility and classic types which cause fragile and stretchy body tissues, poor wound healing...
    KKookieMonster KKookieMonster 18-21, F Oct 21

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    I have IBS (Irritable Bowel Syndrome). I've always had a very sensitive digestive system, but it became really bad in 2010-2011. It was triggered because I had severe depression...
    spacepixie spacepixie 26-30, F 2 Responses Oct 24

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    This will be long and rambly, mostly because this is the first place I've found where I can vent to others who may be in similar situations that’s not FB related where everyone I...
    lisabug75 lisabug75 36-40, F 4 Responses 3 days ago

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    yep I had a lazy eye in both since birth and now I suffering from speech problems I have often hard time say things but the eye clinic gave me eye glasses but these are not regular...
    Rex76456 Rex76456 13-15, F 5 hrs ago

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    October 8 2014 was my last normal day . October 9th I started to feel tingling and numbness in my hands and feet. I felt weakness in my knees and fumbled things with my hands. So...
    aimeelou22 aimeelou22 36-40 Oct 21

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    I was looking for the group "I have a hard life", but this group doesn't seem to exist. I guess my life has been pretty hard so far. It certainly has never been easy. But what...
    AmIAMaleHSP AmIAMaleHSP 26-30, M 1 Response 4 days ago

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    Not at all. I've nevee had a specific type... just looks and personality.
    irreelevance irreelevance 16-17, F 2 Responses 7 hrs ago

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    although they say I have lots of defects with language and speaking, i have been told its because of asperger's syndrome i am really good in maths physics and other subjects that...
    daniel147 daniel147 13-15, M 1 Response Oct 22

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    In year 1992, I came down with Ramsay-Hunt Syndrome. Its been a long battle. My face first paralyzed on one side and three months later, the other. This has affected my vision...
    Gustavp Gustavp 70+, M 3 days ago

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    My life will never be the same. In 2011, an extremely traumatic event happened to me and since then my life had never been the same. It's easiest to just list the thingsthat were...
    XxAlphaCentaurixX XxAlphaCentaurixX 26-30, T 1 Response 1 day ago

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    Hello all I have dermatomyositis. About 12 years ago it started. Before that I was ok, except I had Raynauds from a teenager, I thought it strange but never went to a doctor with...
    gabrielsgirl gabrielsgirl 61-65, F Oct 22

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    Hi all, I am writing from a television casting company. We are currently casting a new medical mystery show for Discovery and looking for patients whom have been diagnosed with a...
    mysticartpictures2 mysticartpictures2 36-40, F Oct 22

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    I have RLS. I cannot just "stop moving". My legs twitch sometimes and sometimes, it just feels like I NEED to move. It's the most uncomfortable feeling I've ever had and it's...
    britteller britteller 18-21, F 1 Response Oct 23

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    I'm writing this now because I need to get it out. I'm having trouble deciding what to do. School's been out for a few months and since then I've tried a 30 day free trial period...
    ftmFreddy ftmFreddy 18-21, T 1 Response Oct 24

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    Considering that when I was at school no one had heard of Asperger's it doesn't surprise me that not many people my age have been diagnosed. So their must be thousands wandering...
    Homejames Homejames 51-55, M Oct 25

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    I'm learning to deal with Asperger since my partner and his son moved with me and my son; his son has asperger and we have just known about it, it helps us to explain things... now...
    moniperu moniperu 46-50, F Oct 25

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    I have been married to a man with undiagnosed Aspergers for 10 years. For the first 5 years of our marriage he was out to sea (Navy) the majority of the time ; it's not until he...
    njleoladye njleoladye 36-40, F 3 Responses Oct 25

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    yeah it's called being better than you. B.T.Y. syndrome
    NotBiasedBAM NotBiasedBAM 18-21, M Oct 29

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    Shock is obviously the first reaction but having then seen and spoke to her in a strange way I feel relief for her. This might help people who know anyone that is suffering with...
    CoitusInterruptus CoitusInterruptus 31-35, F Nov 2

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    I was diagnosed with CIDP when I was 12 (year 7) and I laughed when they told me because even though I had no idea what it was and the name was such a mouthful, I was relieved to...
    AlexPeyton AlexPeyton 18-21, F Nov 2

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    I have had a college soccer career ending concussion. It's frustrating yes. Days are hard and few understand. But I am blessed and when I get frustrated I take a deep breath and...
    am0116 am0116 18-21, F Nov 2

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    I got a really bad call from the school yesterday. He's been supposedly acting out in class. He says his teacher never believes when he says another student is picking on him. My...
    flypiggie flypiggie 26-30, F 1 Response Nov 4

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