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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'm 13 and have known that I have Poland syndrome all my life I'm lucky though I'm only missing my right pictorial muscle, my breast is inverted and my fingers on my right hand are...
    Incorrect13 Incorrect13 13-15, F 1 Response May 19

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    I have Crest Syndrome, i'm only 20 years old, I've known about it for about 2 years now. I'm currently 14 weeks and 5 days pregnant. Just curious to know how everyone deals with...
    taylaelise taylaelise 18-21, F May 7

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    (I actually don't "have" it anymore, as I'd be well-over dead.) I had serotonin syndrome from 2011-2013. I confused it with mania, and I had never had a seizure before, so I didn...
    grindhound grindhound 22-25, T May 12

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    There's two types of people with aspergers . The ones who can't hold a conversation to save their life AND the ones who talk about anything and everything they know nonstop till...
    JoshRobin JoshRobin 18-21, M 8 Responses May 9

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    I invite everyone that has Poland Syndrome to visit my group on Facebook it is a closed group, I look forward to seeing you all there.
    Gene47 Gene47 46-50, M 1 Response May 1

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    Hi everyone, my name is Lindee and I am now 24-years-old going on my 6th year of having POTS syndrome. Aside from the dizzy spells, fatigue, anxiety, brain fog, confusion and...
    shultm1 shultm1 22-25, F May 15

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    Hi! I'm 17 years old, and I was diagnosed with Turner's syndrome when I was a baby. At school, a lot of people don't understand me, and so I don't have a lot of friends and often...
    musiclover48 musiclover48 16-17, F 1 Response May 1

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    first of all I found all if this by chance and I almost started to cry. I was diagnosed with PS when I was born (thank you Cali hospitals) my right hand was small and webbed and I...
    Everrisingmoon Everrisingmoon 18-21, F 1 Response May 1

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    I've been diagnosed since I was 17 so just over a year ago yay I have a tendency to make social blunders and meltdown at the smallest things I am also a somewhat rare female Aspie
    Robinwing Robinwing 13-15 2 Responses May 2

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    One of my reasons for being here is 2 meet peeps like me. Luckily for me, only my breast at my right hand side is affected, it hasn't grown at all, staying in boarding school and...
    4everoptie 4everoptie 16-17, F 2 Responses May 9

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    I crave baking soda ... It don't know why.. I do have low iron.. I've had several transfusions but I just can't stop.. I eat baking soda all day if I could.. N I also crave ice I...
    tee08 tee08 31-35 May 11

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    Hello mother of a lil guy that was diagnosed with klinefelter :( the more I read the more I worry about him. I have had diffrent doctors tell that they are not to sure what this is...
    debnmar debnmar 36-40, F May 18

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    My 1month old lil boy was diagnosed with klinefelter. .the more I read on this the more am worried ,I keep wondering how this will affect him :( I keep praying that its not as bad...
    debnmar debnmar 36-40, F 3 Responses May 18

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    My sister and I both have been diagnosed with MELAS. I am 22 and my sister is 26. She was diagnosed first with the genetic disease when she was about 20. We both live in Toronto...
    hedyc hedyc 22-25, F May 21

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    I'm wanting friends like me someone who understands and also thinks and sees things in away others don't. I want someone who hears i have AS and won't go off about how they are so...
    DriftingLeaf DriftingLeaf 18-21, F 2 Responses 5 days ago

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    first of all I found this by chance and I almost started crying. I was diagnosed with PS when I was born. my right hand was small and webbed with the middle digits missing and my...
    Everrisingmoon Everrisingmoon 18-21, F 1 Response May 1

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    This is something I hate to admit.. After being kidnapped, used, and abused, it still makes me cringe when people say "he'll get what he deserves" and much worse.. I hated him for...
    LilVixen17 LilVixen17 16-17, F 1 Response May 9

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    How expensive is the Mayo Clinic Pain Rehab Program??
    december789 december789 16-17, F May 18

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    my name is cyerra and im only 16 i started eatting baking soda when i was 14 and i love it so much but my mom found out and stop buying it and my bidy was craving so bad for it so...
    Cyerra16 Cyerra16 16-17, F May 20

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    I live a strange life. On the outside I try to smile, to be friendly, and to just love the people around me. On in the side I'm angry, I'm frustrated, I'm aggravated, and I'm...
    zerosolution zerosolution 36-40, M 1 Response May 14

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    I am a 33 yr old female with a PhD and have been constantly lightheaded for months. My symptoms last all day/every day and include feeling faint, tremors/skakiness, shortness of...
    healthproject healthproject 31-35, F Apr 29

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    I have not posted since 2013... This post is kind of an update and also a weight question for fellow Achalasia/Gastroparesis/GI Dysmotility sufferers. It is a bit of a long read so...
    AlxandriaNicole AlxandriaNicole 18-21, F May 21

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    I lived in Mexico for a while and got use to speaking Spanish. After I moved and came back, I kind of had this slight accent. I have this Spanish type accent.
    SaiyanCat SaiyanCat 18-21, M 2 Responses May 12

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    I Dont Think Of What Im Saying...I Would Let My Feelings Talk...You Will Really Have To Annoy Me...I Have A Different Type Of Rage...I Am Able To Hurt You Anyway I Can
    BearHugs20 BearHugs20 13-15, F 1 Response May 15

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    I'm only 21 and I've been suffering from back and neck pain for nearly 2 years now. i was in a bad car accident last june that had made my back pain even worse ( i had already...
    darnswell13 darnswell13 18-21, F 2 Responses 6 days ago

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    Can anyone help me with sapho syndrome. .....
    agha1234 agha1234 31-35, M 1 Response 12 hrs ago

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    That is one thing I really don't like about the A.D.D. I have. It makes typing Stories here on E.P. more time-consuming than it really needs to be. I mean, I may start out every...
    Jugemu Jugemu 31-35, M 2 Responses May 7

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    I am a 17 year old girl living in Australia, and I have struggled with having a solid friend group my whole life. I have had good friends throughout the years, but mostly they have...
    spoorenism spoorenism 18-21, F 3 Responses 12 hrs ago

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    I am so glad I stumbled on this category of posts, because reading of other people's similar experiences is somehow helpful to me, although I'm sorry for all of your troubles. I...
    2323Anonymous 2323Anonymous 51-55, F May 11

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    Ok, y'all ready for another rant? Here we go in 3...2...1...NOW! I have a classmate named Sylvia. She is SO. FŬCKING. ANNOYING (there's gonna be a lot of letters with weird...
    BlueMetalChick BlueMetalChick 18-21, F 14 Responses 5 days ago

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    So, after 9 months of long distance relationship.. We decided to break up. This happened especially because he started liking a girl and he was suffering for the distance. Anyway...
    cindyy4 cindyy4 18-21, F 1 Response 14 hrs ago

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    Yes, I know, it’s 2015 and I’m just now getting one. But EP removing its blogging feature has forced my hand and I’ve moved it. So read it here: http://slippedsecrets...
    SpilledSecrets SpilledSecrets 26-30, F 8 hrs ago

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    I had just moved along with my bby bro after our mom passed away. I was 22, and had been in a serious dark depression after my mom came to my apt a yr&half prior to rescue me...
    Sugasug Sugasug 41-45, M 2 Responses 4 hrs ago

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    I just joined this, it says I'm a male but I am a sixteen year old year girl, I typed 'how to cut yourself?' Into Google and it brought me here, I don't know why wrong with me but...
    shaunajune shaunajune 18-21, M 1 Response 2 hrs ago

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    I have Asperger's Syndrome which is a high functioning form of autism. I got diagnosed at 7, but my parents told me I was BORN with it. I guess I was born abnormal after all. I...
    maialove maialove 22-25, F 2 Responses 4 days ago

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    I invite you all to come over to my Poland Syndrome Suppport (USA) Facebook page, this is a closed group and we are very open and willing to lend advise.
    Gene47 Gene47 46-50, M May 1

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    I invite you all to come over to my Facebook group page, Poland Syndrome Support (USA).
    Gene47 Gene47 46-50, M May 1

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    I am a 16 year old girl and I'm still in high school, that's tough as it is but I do live with polands syndrome and its makes life harder especially in this day and age. When...
    MelissaM98 MelissaM98 16-17, F 3 days ago

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    Hello fellow CES survivors my heart is out to you all I had surgery on March 4 2015 laminectomy/discectomy emergency decompression was paralyzed for 30 hours .This syndrome is one...
    clint03 clint03 36-40, M 6 days ago

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    INFJ PERSONALITY (“THE ADVOCATE”) The INFJ personality type is very rare, making up less than one percent of the population, but they nonetheless leave their mark on the world...
    snowberry75 snowberry75 36-40, F 2 Responses 3 days ago

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