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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

    I learned I had it at age 5 and they said I was lucky to be alive. The only downside is that I have trouble learning in school
    metalchick18 metalchick18 18-21, F 1 Response Nov 4

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    I think. I'm no doctor, but I was reading the symptoms and I know I know that's no way tell tell if you have it. I'm emotionless, I don't make eye contact, I'm clumsy and awkward...
    SunsetTears SunsetTears 18-21, F 6 days ago

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    So many people without it have no idea of the pain it brings along. Today, I'm meeting with the Lender for our new house, and I can't control the neck tics and I'm hurting on a 8...
    jeepers92 jeepers92 41-45, M 2 Responses 5 days ago

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    I think I have Aspergers, I love arts so much I think it's the only life where I want to be, I love seeing great murals an architect designs, I can get obsessed and lost when I...
    perennialsorrows perennialsorrows 31-35, F 4 Responses 3 hrs ago

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    I can't meet people's gazes. I have single minded focus on certain things. I am clumsy (found a way to help that.) I usually end a conversation just because I can't continue it, I...
    Ditum Ditum 18-21, M 2 hrs ago

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    Its harmed me a lot. I was bullied mercilessly up until the end of high school, and I'm still worried that people would want to exclude me socially. Although I now appear to be...
    Almostanonymous Almostanonymous 22-25, M 2 Responses Nov 9

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    Had it for around six hours now :(
    TreeHuggingHippie000 TreeHuggingHippie000 41-45, F 2 Responses Nov 5

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    Honestly, learning I had it destroyed my hopes of being able to belong in society. Sorry i'm not being positive about my experience but that doesn't make it any less real. Let me...
    Darknessisgrowing Darknessisgrowing 18-21, M 4 Responses Nov 6

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    Do any of get to do anything alone?
    shadowfluffy6 shadowfluffy6 18-21, F 5 Responses Nov 11

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    I've suffered with RLS most of my 55 years. Found out gluten is a huge trigger. Especially at night. Take Requip 4mgs at night also. Definitely helps avoiding gluten.
    Sirkutter Sirkutter 51-55 Nov 15

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    It turns out I have polycystic ovary syndrome and that causes my testosterone levels to be dangerously high, estrogen to be dangerously low, insulin to be really screwed up...
    polyglotparrot polyglotparrot 13-15, F Nov 14

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    I have a twin brother that survived Guillain-Barré Syndrome or GBS. He was diagnosed at the age of six and it took a year for him to get treatment and get over the disorder. GBS...
    tinytornado95 tinytornado95 18-21, F 1 Response 1 day 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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    ** 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 Nov 19

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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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    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 Nov 16

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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 Nov 19

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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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    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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    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...
    MeSolumRelinquatis MeSolumRelinquatis 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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    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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    I had a nervous breakdown 20 years ago and wasn't hospitalized. I lost my children to rich people and was homeless for 20 years. I have OCD< ADD, Fatherless Daughter Syndrome...
    growth60 growth60 61-65, F 1 Response 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 suffer from ibs (irritable bowel syndrome) I am 13 years old and it sucks and hardly anyone has it at my age and honestly no one understands me it affects my everyday life I can...
    emilycatherine emilycatherine 13-15, F 1 Response Nov 11

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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 Nov 13

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    Anyone else here have this illness?
    leyla29 leyla29 26-30, F Nov 15

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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 Nov 16

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    Marfan syndrome is the cause.
    MiddleSister45 MiddleSister45 41-45, F Nov 17

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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 Nov 18

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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 Nov 19

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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 Nov 19

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    This experience message is for anyone who currently suffers from Hidradenitis Suppurativa (HS). PLEASE read my entire post before commenting, I have an EXTREMELY IMPORTANT and...
    starlits0ul starlits0ul 26-30 4 days ago

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    After 4/5 years of being called lazy when I feel too weak to move, or that it is all in my head, I was finally diagnosed with POTS yesterday. My parents aren't dealing with it well...
    anon1995 anon1995 18-21, F 4 days ago

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    So glad to have found a forum on which to share my experience with Aspergers. I'm hoping for some ideas and strategies to better cope. Both my Husband and Stepson are afflicted...
    Aspierollercoasterride Aspierollercoasterride 36-40, F 1 Response 3 days ago

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    So, when we get our dogs as puppies, we're technically kidnapping them in a way, right? Since they have no inkling as to what is happening, to them it's kidnapping I suppose. (Or...
    LiveForAnotherDay LiveForAnotherDay 13-15, F 2 Responses 3 days ago

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    Hi, Im new to this site, and anything like this. I recently found out that my BF, and as of last month, Husband has AS. I am not a Doctor, but he has all the characteristics and...
    Metalmissys Metalmissys 46-50, F 1 Response 3 days ago

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    I don't remember a day where I actually felt normal. Could run. Didn't have my parents yell at me for "not controlling my symptoms". People asking why my legs are all red and...
    HebBay HebBay 18-21, F 1 Response 3 days ago

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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 Nov 16

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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 Nov 17

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    ...and I'm still recovering. I used to wonder about my father... how little things could send him into a rage. How his words and actions always mismatched the perceived offense...
    DubstepEnderFox DubstepEnderFox 26-30, F 40 mins ago

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