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I Have Schwartz Jampel Syndrome

A Schwartz Jampel Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Schwartz Jampel Syndrome. You're not alone. 5 People

    Want Know More About Sjs

    i have son age 8 years has sjs and i am looking to information about sjs or people have it
    amasd amasd 13-15 1 Response Apr 15, 2009

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    SJS?? Or Undiagnosed

    Hi :) My names Angharad and I'm 18, I'm studying art in collage and want to go on to become a jeweller/silversmith. At the moment I have an undiagnosed condition that my geneticist thinks may be SJS. I'm not so sure though so am looking for any information. Symptoms Skeletal...
    Annb17 Annb17 18-21, F Sep 25, 2013

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    Related Experiences

    Hello: My daughter has Parkes Weber Syndrome. I'm wondering if anyone in this group is from Ontario?
    Momofgirl Momofgirl 41-45, F Feb 5

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    One year ago is when I started getting sick. It's started out as maybe an hour in the morning I would feel extremely nauseous and most of the time I would get sick and then go on...
    kateyrose98 kateyrose98 16-17, F Feb 9

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    I have it. Mayve yes or maybe no. I dont know but there are signs. Although I wasnt diagnosed coz going to a psychiatrist or something has a negative stigma in my place. When I was...
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 4

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    Dear CFS: **** you! I hate not being able to think clearly. I hate not being able to play with my kids Saturday *and* Sunday. Instead, I have to pick one day and then use the...
    LookingForIt987 LookingForIt987 41-45, M 2 Responses Feb 11

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    Hi, I'm 21. I slipped a disc in December 2014. I had CES symptoms for 2 weeks before having my disc removed as I was on a cruise ship. I guess I'm lucky as I can walk normally with...
    sdavis313 sdavis313 18-21, F 1 Response Feb 15

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    Hi everyone! So I'll be posting my full story later but just wanted to do a short version. I'm 17 and was diagnosed in October 2014, they found out it was BCS after only being...
    Abbyrk Abbyrk 16-17, F 1 Response Feb 15

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    I can't say 100% that I have this (just 98%) I wish I knew how to get better because I also have pseudotumor cerebri and the two are going in circles with each other right now...
    lu7998 lu7998 31-35, F Feb 16

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    Hi I'm 24 years old and currently being diagnosed with pts. 5 months ago I had my first symptom which came out of no where and was severe! I have had sooo many tests as you would...
    megzeee megzeee 22-25, F 1 Response Feb 18

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    As an Aspie, I get very tired having to socialize and talk to people. I'm often accused of being aloof, standoffish, or downright rude. It's not my intention to be mean or...
    Sorgun Sorgun 26-30, M 3 Responses Feb 21

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    I was born weighing two pounds and couldn't eat on my own. I wasn't eating food of any kind and was diagnosed with RSS when i was an infant. At first i was put on a N G tube (a...
    RTKDcarmichael1stdegree RTKDcarmichael1stdegree 18-21, M 1 Response 4 days ago

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    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses 4 days ago

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    It's so tough to get exercise. I want to exercise so much...but I can't because it hurts and my joints pop every time i do:(
    Enpfor12 Enpfor12 18-21, F Feb 10

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    i am aspie and i am proud of it. it makes me who i am and ucan all say like it makes some things i know i was diagnosed last year with this and high functioning augism and this is...
    prodemonz prodemonz 13-15, M 3 Responses 5 days ago

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    Indeedly--makes effective communication a ***** I gotta say. And then there's the difficulty to quickly adapt, and sometimes people say stuff in a way that you just don't get and...
    Cryx Cryx 16-17, F 1 Response 1 day ago

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    My sister does, and I'm that sibling. I have asperger's syndrome, a form of high-functioning autism. When I was younger I would get angry at the littlest things. I remember...
    ftmFreddy ftmFreddy 18-21, T 1 Response Feb 9

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    Hi call me Sean. I'm 21 years of age and I have Poland syndrome. I am missing my left pec muscle and it haunts me practically everyday. I feel as if I have I've become alittle bit...
    Life1sinteresting Life1sinteresting 18-21, M 1 day ago

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    Quite a few, actually. Let's see: Velo Cardio Facial Syndrome Asperger's syndrome Depression Obsessive Compulsive Disorder That's me.
    ftmFreddy ftmFreddy 18-21, T 5 Responses Feb 9

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    The ever present question, are we being manipulated? If you say, well yeah, duh. Then you ask yourself the next question, who is manipulating us? Welcome to the mind of all tin...
    everydayisagoodone everydayisagoodone 31-35 2 Responses Feb 13

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    Hi I am a 20 year old girl in the uk. I was diagnosed with mosaic turners when I was born but I've never even thought about the condition that I have, it's never really effected me...
    MissLisac MissLisac 18-21, F 1 Response 3 days ago

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    just wondering about others experiences with POTS syndrome. I have lost all strength in my legs and im in a nursing home. Therapist says ill be in a wheelchair for a month. was in...
    Jzimo Jzimo 22-25, M 1 day ago

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    Pretty much self explanatory. Additional info for the clueless: http://www.urbandictionary.com/define.php?term=White+Knight+Syndrome
    aberrations aberrations 22-25, M 16 hrs ago

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    I have a brother who has aspergers. It is very challenging as he had an atypical childhood and was unfortunately abused. I love him so much and wish for him to feel in control of...
    zen001 zen001 22-25, M 1 Response Feb 3

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    Does anybody living in the uk have pots?
    emilysorrell emilysorrell 16-17, F Feb 7

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    Hello. I have been experiencing symptoms for 6 months now and I was very recently diagnosed with Rumination Syndrome. I am on 20mg of Amnitriptolyn to help cure but there hasn't...
    minmouse614 minmouse614 26-30, F Feb 9

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    I've missed 17 days this semester already and am very behind in school. Does anyone else have a really hard time keeping up? My mom says I can start homeschooling but not until I...
    TavynKeylee TavynKeylee 13-15 2 Responses Feb 10

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    I have suffered with pica since I was a child. I eat drywall and I need to stop! now! I've tried everything, I take supplements, I try to find something less toxic to meet my needs...
    lilacgarden2015 lilacgarden2015 22-25, F Feb 12

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    I got into a relationship with a man I thought was my soulmate, it happened online and he lived in a different state. He flew over twice and I flew to see him once. For 6 months...
    CosmicPrincess CosmicPrincess 26-30, F 1 Response Feb 14

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    After 5 years of battling with POTS I have finally managed to stay healthy long enough that my doctor approved me for a volunteering program in South Africa! After years of wishing...
    haileybb haileybb 18-21, F 1 Response Feb 14

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    HAVE ANYBODY EVERY STOPPED THIS COMPLETELY? ????
    toiletpapereatter toiletpapereatter 31-35, F Feb 19

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    I am 31 and my husband is 31 as well?we are a gay couple? for the last 7 years My husband has been aware of his Aspergers Diagnosis and I, Have done a very extensive amount of...
    KnightOfTheMadHatter KnightOfTheMadHatter 31-35, M a week ago

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    Hello. I am a 23 year old male, and this is my story that I want people to know. It all began back in my old home. My parents were great and wonderful parents to the eyes of the...
    familymaynotbeforever91 familymaynotbeforever91 22-25, M 3 Responses 4 days ago

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    im self diagnosed i truly feel that i have it
    TomboyBeth TomboyBeth 13-15, F 1 Response 10 hrs ago

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    Okay this might going to be a long post Does this ever happen to you that you are living a ****** life and then you are straight transported to cloud 9 then again everything comes...
    eriloves1D eriloves1D 16-17, F 5 hrs ago

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    Terminal insomnia, more specifically. Which means I don't have a problem falling asleep but I wake up too early. I usually wake up at around 330AM. Sometimes it's an hour later...
    Undeadly Undeadly 41-45, F 2 Responses 4 hrs ago

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    I am 22 years old and have had CRIPPLING emetophobia for as long as I can remember. In fact, my fear is so bad that I can't even stand to hear or read the "v" word...so browsing...
    hummingbirdbullets hummingbirdbullets 22-25, F 6 hrs ago

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    I have kept open mind to new ideas and experiences- as they say, a ship is safe in harbo, but that's not what ships are for. Accepting some level of risk in life is important. You...
    Zelaleme Zelaleme 46-50, F 2 hrs ago

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    Some of you will know about my horrific trash TV habit. I also have an addiction to trash Youtube videos..I mean EP has kind of taken over a lot of the time I used to spend on it...
    Blondiex15 Blondiex15 36-40, F 3 Responses 3 hrs ago

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    yes i have when they put me in a mental hospital. i was detained. it made me feel like a criminal and not a sick person at all . it made me feel i did somethink wrong.and i was...
    furrycats furrycats 31-35 1 hr ago

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    I wish I had a friend I could play guitar with. I haven't had any friend's in over 10 years.
    mitchmiller1969 mitchmiller1969 41-45, M 5 hrs ago

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    I posted my alopecia experience I have alopecia totalis Check it?
    eriloves1D eriloves1D 16-17, F 5 hrs ago

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    About an hour of actual sleep and I have to be at work at 4am. I try not rely on sleeping pills, as I don't like the idea of taking medication unless it's absolutely necessary, but...
    AmayaTsuki AmayaTsuki 26-30, F 1 Response 5 hrs ago

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    I have the potential to be a really strong, attractive and intellectual woman but sometimes lack confidence. Every year my laziness and sometimes my lack of fashion sense for...
    alostone alostone 22-25, F 5 hrs ago

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    God is probably the only best friend I've ever had. I talk to Him sometimes when I don't have anyone else to turn to. He's a good listener although He doesn't talk much..or talk at...
    shioshishio shioshishio 18-21, F 1 Response 4 hrs ago

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