Post

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

    Your Response

    Cancel

    Related Experiences

     I don't actually have Aspergers Syndrome myself(that I am aware of). I am posting this story becauseI would like...
    Jugemu Jugemu 31-35, M Aug 3

    Your Response

    Cancel
    Having Aspergers Syndrome is quite challenging for me. I have always felt like a ghost or a being living in another world in high school. Because of my particular interests, I have...
    loveVictorandDumas loveVictorandDumas 16-17, F 1 Response 3 hrs ago

    Your Response

    Cancel
    4 months I had rotator cuff surgery with a full recovery expected. Needless to say after several phydical therapy tratments and pain meds I had little to no relief. Finally after...
    fancyface19 fancyface19 46-50, F Jul 22

    Your Response

    Cancel
    In April 2012 I was officially diagnosed w/POTS Syndrome after several months of symptoms of worsening symptoms. I was one of the fortunate few who came across a neurologist at the...
    Jill73 Jill73 41-45, F Aug 6

    Your Response

    Cancel
    This is a follow up for my story "what doesn't kill you makes you stronger" My name is grace. I am now 16 years old and I just got my correction surgery last week! I had a muscle...
    marinagrace marinagrace 13-15, F 1 Response Jul 22

    Your Response

    Cancel
    It started with me getting these high pitch squeals. Like a surge up my spine and unless I concentrated hard, it would come out. Usually when I was most peaceful it would suddenly...
    Skywalker1979 Skywalker1979 31-35, M 1 Response Jul 22

    Your Response

    Cancel
    I have had POTS as a definite diagnosis for two years now, however I have had it for many years. I am 18 now, an have recently graduated May 24, 2014. During my junior year of...
    TheForestChild TheForestChild 18-21, F 3 Responses Jul 29

    Your Response

    Cancel
    Anybody who has POTS have photophobia (sensitivity to light)? Mine is really bad and worsening. I don't know if it's another symptom of POTS or should I get checked out
    december789 december789 16-17, F 3 Responses Jul 30

    Your Response

    Cancel
    I'm beginning to think I have it. I've been craving nail polish lately. I love the smell of it. And now I want to taste it. I don't get why I suddenly got this craving, but it's...
    oathtoorder oathtoorder 18-21, F Aug 1

    Your Response

    Cancel
    Hi all! I too have Pica. It all started wen i was at college. My frnds used to eat small pieces of slate pencil. And one day i too tasted them and liked them from then. I was...
    CuteCat21 CuteCat21 18-21, F Aug 7

    Your Response

    Cancel
    I have suffered from pica since i can remember. REMEMBER IT IS AN EATING DISORDER AND YOU SHOULD GET HELP. It started in primary school eating pencils and the grit off the pavement...
    xsamanthaclaire xsamanthaclaire 18-21, F 1 Response Aug 8

    Your Response

    Cancel
    I always loved the smell of earth after it rains. The smell made me search for the taste...of the smell. I found it! It"s dirt, soil, earth, whatever you want to call it. My...
    yummy2mytummy yummy2mytummy 41-45 Aug 10

    Your Response

    Cancel
    Im not actually sure that i am an aspie, but i have a LOT of the symptoms and i just took an online test that put me at borderline for having it. It was one of those short online...
    shinjorai shinjorai 36-40, M 1 Response Aug 11

    Your Response

    Cancel
    Hey, I only got diagnosed today after 4 years of trips to the optometrist. I'm 23 and only noticed it in the past few years & it's gotten worse in the past 6 months . Unless I tilt...
    rosielee21 rosielee21 22-25, F Aug 11

    Your Response

    Cancel
    YOU ARE THE MOST BEAUTIFUL PERSON SOMEONE COULD EVER WANT, YOU HAVE ALLWAY'S BEEN PERFECT JUST THE WAY YOU ARE!, LIFE OWE'S YOU EVERYTHING, JUST ASK!
    JEM404 JEM404 41-45, M 5 days ago

    Your Response

    Cancel
    In January I was finally diagnosed with POTS. For the past three years I have been being misdiagnosed with depression, migraines, and other stuff. It was really hard because my...
    babyhunnybunny babyhunnybunny 16-17, F 4 days ago

    Your Response

    Cancel
    CAN I HAVE MORE RAT VENOM FOR MY MARTINI?
    JEM404 JEM404 41-45, M 1 day ago

    Your Response

    Cancel
    My ideal type of boyfriend funny and really tall or same height im 5,5 same age had that forever and I love thuggish gangsta bois ;) I was born n raised n the hood so why not hit...
    Xxchristinx18 Xxchristinx18 18-21, F 3 days ago

    Your Response

    Cancel
    I am currently in Atlanta. My boyfriend and I live in Columbus, GA. He's homeless and he'd recently started working at a kiosk in the mall. He was on ninety days unsupervised...
    michelleeads michelleeads 18-21, F 16 hrs ago

    Your Response

    Cancel
    Do males with AS find confrontation from their girlfriends extremely challenging? Do you stop talking to her for weeks even if you suspect you are wrong?
    pingpinky pingpinky 31-35, F 2 Responses Jul 27

    Your Response

    Cancel
    OPEN COPPER,HER NAME IS -NIGHT NIGHT- LARGE SHARON,FULL GARDEN,CARTER CO. KENTUCKY,CALL:JOHN 1-606-474-4770,PENNIES PICKED, PRAISE FOLDINGUNFOLDING,I NEED MY S'MORES MADE WELL,OR...
    JEM404 JEM404 41-45, M 1 Response Jul 28

    Your Response

    Cancel
    i too crave a lot for slate pencils . is thr any remedy to get rid of this?
    CuteCat21 CuteCat21 18-21, F Jul 30

    Your Response

    Cancel
    I had my follow up appt at mayo clinic and they concluded my diagnosis. Read about it at potsisthepits.com I promise my blog isn't boring
    cassidybute cassidybute 18-21, F Aug 11

    Your Response

    Cancel
    It's not a severe case. It's just annoying and embarrassing. People will stare at me and tell me that I blink a lot, or call me stupid **** like "blinky". Really, that's the best...
    Somejoygirl Somejoygirl 22-25, F Aug 13

    Your Response

    Cancel
    IT IS MY EXPERIENCE THAT A FACILITY I ATTEND, "ATTENDED", "WON'T AGAIN", DO'ES NOT TREAT BIRTH DEFORMITY, YES, THIS STATE FACILITY WON'T TREAT A PERSON FOR BIRTH DEFORMITY TRAUMA...
    JEM404 JEM404 41-45, M 1 day ago

    Your Response

    Cancel
    I have wasting syndrome and dementia but I'm currently taking medications for it and hopefully it helps me a bit so I won't have any of it anymore. & Yes it sucks a whole lot and I...
    jacedrew jacedrew 16-17, M 7 Responses Aug 3

    Your Response

    Cancel
    I have a rare type morphea profunda it has caused a 4 cm by 4 cm atrophy on my left hip. I was just diagnosed am a little frightned the doctors are running a lot of blood work to...
    saunders24 saunders24 22-25, F Jul 22

    Your Response

    Cancel
    Does anyone else have this headache type feeling sometimes when your trying to sleep? Or an Alter that's a kid and pretty afraid of everything when he/she have a nightmare? Cause...
    MultipleRex MultipleRex 16-17, M 2 Responses Aug 8

    Your Response

    Cancel
    I am 13 years old. My life has been all messed up because of aspergers syndrome. Aspergers syndrome is incurable. I dont like being bullied by anyone and if people bully me to my...
    Konerko555 Konerko555 13-15, M 8 Responses Aug 2

    Your Response

    Cancel
    All my life, I’ve felt different, like I just don’t quite belong in any group that I’m a part of. Trying to fit in has led to me to trouble. I’ve drank heavily, smoked weed...
    empoweredh22 empoweredh22 22-25, M 1 Response 5 days ago

    Your Response

    Cancel
    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response Jul 24

    Your Response

    Cancel
    I am at a loss and need some help! I went to urgent care in February because I had this horribly terrible rash that itched uncontrollably and was painful. I had clusters of what...
    SweetJFowler SweetJFowler 26-30, F 1 Response 4 days ago

    Your Response

    Cancel
    I've just found out today I have Carpal Tunnel Syndrome .. it's hard for me to participate in Color Guard ..and soon I feel like I would have to stop ..bc the pain is crucial
    lynn1497 lynn1497 16-17, F Jul 24

    Your Response

    Cancel
    I have been diagnosed with Asperger syndrome. Sometimes it just seems like it doesn't fit at all except the unsocial part as most of my routines has fallen apart well I guess this...
    Joiss Joiss 18-21, M 1 Response Aug 10

    Your Response

    Cancel
    I think it is funny that according to this test, I really don't have much of a tendency towards any of them. They were all slight preferences towards one over the other. ISTJ...
    SolitarySummer SolitarySummer 22-25, F 5 days ago

    Your Response

    Cancel
    I always get ISFJ (Introversion, Sensing, Feeling, Judging) on every personality test that I take: According to Myers-Briggs, ISFJs are interested in maintaining order and...
    NerdyGirl78 NerdyGirl78 36-40, F 2 Responses Jul 26

    Your Response

    Cancel
    My nightmare was it was Gore In it I had a sister who was with down syndrome . we are in the house , the bunkbed room off from that was a room that was supposed to be of a...
    Organia Organia 46-50, F Jul 30

    Your Response

    Cancel
    I am named after a syndrome? Im special :] lol.
    xMikayla xMikayla 13-15, F 2 Responses Aug 12

    Your Response

    Cancel
    My Personality Type I have taken this test before, in the year 2010. I was an INTP in January that year, and then an INTJ the next month. Now, I am curious if there has been a...
    mareliberum mareliberum 26-30 5 days ago

    Your Response

    Cancel
    Five different specialists have now told me I should start taking my medication now. Actually it could be six or seven but I don't want to. It isn't going to cure me.
    Teab Teab 41-45, M 2 Responses Jul 22

    Your Response

    Cancel
    I'm not diagnosed due to the doctor saying it'd make it worse if i was. Iv'e said things before about it yet never this far into it i tell people i can cope, that i'm okay about...
    Autumnflowers Autumnflowers 18-21, F 1 Response Jul 23

    Your Response

    Cancel
    I was recently diagnosed in December 2013. I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo...
    CatFlag CatFlag 31-35, F 1 Response Jul 23

    Your Response

    Cancel
    I was only 18, my family life was dysfunctional and I was homeless. I was raped in a homeless shelter but kept the child because I was alone. When I met my son's father he had...
    mamabear1976 mamabear1976 36-40, F Jul 25

    Your Response

    Cancel
    I've had depression and anxiety pretty much my whole life, leading to two hospital stays in my late teens. At that stage it was suspected to be some sort of psychosis, or...
    BJH72 BJH72 41-45, M 1 Response Jul 28

    Your Response

    Cancel
    After a childhood filled with severe pain, day after day in bed..... countless visits to Hospitals...Mri scans...specialist appointments which amounted to nothing, no one could pin...
    thedayyouwentaway thedayyouwentaway 36-40, M 2 Responses Jul 31

    Your Response

    Cancel
    Do anybody have worse symptoms POTS at night.. I how 5 time harder symptom of POTS at night. How evening is coming my symptoms are getting much worsen. How day is ending my blood...
    Drybrain Drybrain 26-30, M 1 Response Aug 3