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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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    My names Alaina, I'm 17, and about three years ago I was diagnosed with Chiari Malformation Type 1. So freshman year of high school I started having really bad headaches, and found...
    burtala burtala 16-17, F Mar 27

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    I am 32 years old, diagnosed three years ago. I have had 5 surgeries on my leg and 3 on my shoulder. I am on anti-depressants, nerve painkillers, anti-inflammatories and...
    gimpy55 gimpy55 31-35, F Mar 26

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    Hello, I'm a mother of one handsome 9 month old boy. When my husband and I left the hospital June 29, 2013. We were never told that our son was born with Poland Syndrome. After his...
    Bernadzikowski Bernadzikowski 26-30, F 2 Responses Apr 2

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    when i was eight, i was diagnosed with a condition named turner syndrome. there were so many life changes, like having to get a shot every night before bed and going to the doctor...
    rachelrubin01 rachelrubin01 13-15, F 2 days ago

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    I have just been put on 10 sodium tablets per day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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    I have a really bad habit of eating flour. Its a really embarrassing habit so I try to keep it to myself but knowing there's other people with the same problem gives me comfort. I...
    KimmyO4Lifeex33 KimmyO4Lifeex33 16-17, F Mar 28

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      My 8 year old daughter has just been diagnosed with Melas after her first episode. She encountered loss of sensation down her right side, but this has now returned. We are...
    21sienna 21sienna 41-45, M Mar 31

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    I have been diagnosed with POTS and misdiagnosed with various other things for 6 years now. I've learned that the most frustrating part about POTS is that it's an "invisible...
    LivingwithPOTS20 LivingwithPOTS20 18-21, F 3 Responses Apr 8

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    When I was a child my parents knew something was different about me, and I was actually delayed in both speech and motor skills. (uncommon for aspies ;o it is more actually common...
    PerfectInsanity1988 PerfectInsanity1988 26-30, F 2 Responses Apr 11

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    I need some feed back. Can anyone please explain their headaches with pots? I want someone to relate to so I can stop thinking I have a brain tumor
    cassidybute cassidybute 18-21, F 1 Response 6 days ago

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    I assume I have had pots for a while but was just recently diagnosed. I am concerned that I have something else going on as well. It's probably easier to say the symptoms I don't...
    crsmith221 crsmith221 31-35, M 2 Responses Apr 4

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    I have a reoccurring dream where I am in a dessert like enviroment, in an ancient city called Hattusa. They called Amber Inana and I was treated like an imperial princess. The King...
    vampiregirl28 vampiregirl28 18-21, F Apr 2

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    Don't give up the hope of it one day getting better.
    LivingwithPOTS20 LivingwithPOTS20 18-21, F 1 Response Apr 9

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    .................interesting
    mstud17 mstud17 22-25, F Apr 12

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    I am 47XXY, I am 25 years old and live at home with my parents, in England. Im not very good at typing, as I find it rather hard to explain, but I just wish someone would...
    johndrinks88 johndrinks88 22-25, M 5 days ago

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    As a young teen I was just constantly thrown on pain killers for back and hip pain. It wasn't until Nov last year it was diagnosed as Fibromyalgia. My energy levels just...
    XanthiaJo XanthiaJo 22-25, F 1 Response Apr 13

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    Hey sorry, I wrote this in a different Experience and posted it, but I feel like it would be better here. I'm just going to paste the link because it won't allow me to copy it, and...
    pneumaGrey pneumaGrey 16-17, T Mar 30

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    Okay this very rare virus I contacted just over 26 years ago. Now I still can't get up from the ground in the sitting position without help. Do more exercise to strengthen your...
    JohnCrighton JohnCrighton 51-55, M 2 Responses Mar 27

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    Mild cp, deformed hand, poor vision and hearing, poor teeth, weak heart, something undiagnosed with my brain (sort like a stroke but not), type 2 diabetes, psoriasis, soliios, ADHD...
    dacraww dacraww 22-25, M Mar 23

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    So I am 21 years old and I suffer from Poly Cystic Ovarian Syndrome, I have done my research and unfortunately it comes with so many issues. But it is common and I would love to...
    o1Nadia1o o1Nadia1o 18-21, F 1 Response Mar 28

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    Was diagnosed back in high school. Felt like it held me back from many things. Yea, I did go 2 dances, junior and senior prom, but people treated me like I was retarded. I'm highly...
    HottRoddTX HottRoddTX 26-30, M 4 Responses Mar 28

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    I have Postural Tachycardia Syndrome, as I only have issues with my heart rate not my blood pressure when standing. Does anyone else have this? What helps? I'm waiting on a call...
    Konig316 Konig316 26-30, F 3 Responses Mar 30

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    Intramarine Isolation Syndrome. It is what I have, my disease. Cool. Quiet. Sometimes green, sometimes blue. Dark, or shining in the sun, but it always feels like no one ever...
    WickedScullyOfTheWest WickedScullyOfTheWest 31-35, F Apr 6

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    I have Tourette's syndrome.
    mrhollingswortg1992 mrhollingswortg1992 22-25, M Apr 8

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    I found out I had Poland's Syndrome in my 30s ( I am now 48) when I was referred to a plastic surgeon. Had an operation but had to remove the implant as my chest cavity kept...
    gamordente gamordente 46-50, M Apr 12

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    I am new to this as I noticed several posts about pots syndrome I was wondering if someone could help me? I have suffered with this since I was 14 (I am now 19) but was only...
    potsie2222 potsie2222 18-21, F 6 days ago

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    I have a question for everyone :) So I was diagnosed with Asperger's Syndrome a few years ago and am aware about it for a while now. Lately, however I have been having random...
    EurydiceKallos EurydiceKallos 16-17, F 3 Responses 4 days ago

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    This is exactly what happens to me and gets mis-labelled as 'anxiety' or whatever. http://www.bcepilepsy.com/files/Information_Sheets/All_About_Partial_Seizures.pdf All About...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 7

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      In most sectors, there are a few general approaches to handle the actual producing processes. These kinds of general approaches are classified as process types. Within the...
    electricproducts electricproducts 18-21, F 7 hrs ago

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    I'm O+! d(^_^o) According to some cultures who say that blood type affects personality, " Type O's tend to be outgoing, and very social. They are initiators, although they don...
    iCaii iCaii 18-21, F Apr 6

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    Just because I like this..... The Type Sarah Kay If you grow up the type of woman men want to look at, you can let them look at you. But do not mistake eyes for hands. Or...
    BloviatingBuffoon BloviatingBuffoon 70+, F 1 Response 3 days ago

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    Wow I dont know where to start.... after having being misdiagnosed on 12/27/2012 and sent home when i arrived because i was in so much pain i could not walk. Returned to the ER on...
    momndom momndom 31-35, F 3 Responses Mar 22

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    Well my dad used to tell me off for eating. I always had a revved up metabolism which continued well into my teens. I could rival any teenage boy. But I was active- I never...
    NekroNomikon NekroNomikon 18-21, F 1 Response Mar 24

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    I was diagnosed with TS when I was very young. My case is mild and my tics are slight but I do feel the internal side effects of TS like anxiety, hyper vigilance, and some OCD. I...
    artMusicBrew artMusicBrew 36-40, M Mar 24

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    I have just been put on 10 sodium tablets per day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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    I have a brother with asperger but he was never diagnosed with asperger's. He was with some neurologists through childhood but all the time was the same thing "attention deficit...
    emi92 emi92 18-21, F 1 Response Mar 25

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    Originally diagnosed with a bacterial ear infection, I actually had Shingles that lead to Bells palsy / Ramsey Hunt syndrome, with the usual symptoms. This is the first time I've...
    johnsonfamily38 johnsonfamily38 51-55, M 3 Responses Mar 26

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    I am the middle of 5 2 older brothers 2 younger sisters. My brothers were always allowed to do what ever they want. Stay up late,drive, and lots of other fun stuff. My parents took...
    Jimmy1313 Jimmy1313 22-25, M Mar 26

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    Please please respond if you are relatable. My anxiety with POTS has become so extreme and i am constantly worrying about every little thing in my body and always thinking...
    cassidybute cassidybute 18-21, F Mar 26

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    But it's not what everyone thinks it is. When you say 'aspergers', people think of socially awkward people who are obsessed with computers or science. But in reality, it's a lot...
    sarah19597 sarah19597 16-17, F 7 Responses Mar 27

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    I was just diagnosed a few months ago but I think I've had it for a few years now. The doctors actually found the tumor in my chest before they realized my eye drooping was Horner...
    Pinkyjolie Pinkyjolie 26-30, F 1 Response Mar 27

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    As a child I suffered from Exploding Head Syndrome.
    needlessthings needlessthings 31-35, M Mar 28

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    My dad was exposed to it in Vietnam. My parents were told by a doctor I was slightly affected. Result? Brittle, easily broken teeth. Was told that by the time I was 35, I would...
    daddyj2008 daddyj2008 36-40, M 1 Response Mar 31

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    I have been a huge fan of the band since I was in 11th grade. The first song I have ever heard by them was My Girlfriends Girlfriend but the song that really gave me the chills...
    blablabla444 blablabla444 18-21, F 1 Response Apr 1

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    headcaches, dizzziness, like flu feeling in the head, im seying everything like in slow motion, heaviness of whole body, and everything combied together it making wierd feeling...
    rihcrissy rihcrissy 31-35, M Apr 1

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    Art pourrait également être Contact tirage et film . Mais de nos jours, l'art est dans everyplace . individus attirer un mur sans enfreindre la loi , manufactors tireront leur...
    Diablo3zss Diablo3zss 22-25, M Apr 2

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    I have been struggling with fatigue with pots for the last 15months. Has anyone found anything to help this?
    Kas25 Kas25 22-25, F 1 Response Apr 6

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    My daughter has smas and is being cured by tilting upside down at a 45% angle on her back with arms over her head.She was looking at a surgical feeding tube after two years of...
    racheldunkley racheldunkley 41-45, F Apr 6

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    I was 26 years old when I got GBS. I was a new mom of a four month old baby girl. Before she was born I had taught 1st grade. The plan was to take a year off from teaching then go...
    mommabrick5 mommabrick5 46-50, F 1 Response Apr 7

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    I'm in track this year doctors say it's good to stay active. Especially if you have pots I never thought of myself as a runner but joining track made me realize you don't have to...
    Megan2020 Megan2020 13-15, F 1 Response