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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

    Ok so this is important for anyone who has CFS or anything like it. I have had this illness for 4 1/2 years now, and I've been to a fair number of doctors. But it took awhile to...
    Invisibleninja12 Invisibleninja12 18-21, F 1 Response Jan 14

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    I'm a 21 year old female with possible hypermobility syndrome/EDS Type 3 or fibromyalgia. My mum has hypermobile joints but hasn't been diagnosed with HMS/EDS but has been...
    Kari9349 Kari9349 18-21, F Jan 1

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    A new information website has been developed for stiff-person syndrome to educate, empower, and advocate. www.thetinman.org
    TheTinManOrg TheTinManOrg 51-55 Jan 2

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    My partner was diagnosed with Stiff Person Syndrome in July 2014. Due to my own ignorance about the illness and my own selfish needs of refusing to accept her sudden disability, i...
    GeekyGirl82 GeekyGirl82 31-35, F Jan 12

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    Hello there! I'm currently making some researches about Maladaptive Daydreaming Disorder. A disorder in which the person uses daydreaming as a defense mechanisme to escape from...
    RichardAndon RichardAndon 22-25, M 4 Responses 5 days ago

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    Can someone please tell me they're symptoms of polycistic ovarian syndrome x
    iwantababy111 iwantababy111 16-17, F 5 days ago

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    I have had CFS for about 12 years and am sick of people either not believing that I have it or giving me "helpful" advice (such as: oh, just push yourself a little more each day...
    TealGirl TealGirl 31-35, F 1 Response Dec 26, 2014

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    I hate that I am incompetent. Alright, so basically, my mom expects me to be able to do all kinds of things without being taught, because she thinks they're obvious. Well, they...
    sethdots sethdots 18-21, T 1 Response Dec 29, 2014

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    I have it. My favorite symptom is that people with it prefer nonfiction over fiction which I do.
    bobherry bobherry 16-17, M 1 Response Jan 6

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    Having more problems with my right bicept, I guess I'll talk to my doctor about it, Still under stress from an unsuccessful consult about my neck injury, Doctors seem to judge me...
    JEM404 JEM404 41-45, M Jan 17

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    I had my diagnosis at 19, I have several other medical problems which have resulted in very limited mobility. I have good bouts where I can move much more easily but I have 'flare...
    noonespecial44 noonespecial44 26-30, F a week ago

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    Post diagnosis things went sour, my carefully constructed world started collapsing around me. Everything I had done to cope with a condition I didn't realise I had became...
    Teab Teab 41-45, M 6 days ago

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    It's all a question of precision .. F84.5 but that was then .... So we notice detail .. I walk into a room and notice a paper clip on the floor .. What is he doing ???? Hunter...
    TheRebelFaction TheRebelFaction 51-55, M 1 Response Dec 29, 2014

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    Got in trouble at school so many times because of it. Its ruining my life to be honest.
    idfwuu idfwuu 13-15, M 4 Responses Jan 1

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    How do you guys manage CFS? Seems like I can't live a normal life like I used to.
    awesomesauce2 awesomesauce2 22-25, M 4 Responses Jan 8

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    This is an oddly specific group
    Gabbi97 Gabbi97 18-21, F 2 Responses Jan 12

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    Which explains why everybody hates me. :D
    Symbiopsychotaxiplasm Symbiopsychotaxiplasm 26-30, F 4 Responses Jan 16

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    Found a very good read! Check it out http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure#Explanation_of_the_Fatigue_Problems_in_CFS_Patients
    awesomesauce2 awesomesauce2 22-25, M a week ago

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    Asperger's symdrome is something thats gives me a lot and takes a lot too, I can recite 100 digits of pi easily, dolve a rubix cube in 1 min 13 seconds, and tell you anything about...
    Kringle95 Kringle95 18-21, F 2 Responses 6 days ago

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    I always wanted to meet someone with aspergers like me wish I knew someone near :(
    kittyanthony kittyanthony 22-25, M 2 Responses 5 days ago

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    I have Asperger's Syndrome and am depressive as well, I would love new friends
    deanratzloff deanratzloff 13-15 1 Response 2 days ago

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    Hello, Im a 15 year old boy and live in Finland, since i havent told anyone ever about my duane's syndrome type 1 i tought it would be a good idea to share my story here. I was...
    thundercoolmint thundercoolmint 13-15, M Jan 11

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    It's coming up to 2 years since it was suggested that I have Turner Syndrome... and one thing that I'm really struggling with is gender identity. Obviously, I have all the girly...
    LoneSouls LoneSouls 26-30, F Dec 31, 2014

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    My little boy (4years old) was diagnosed with Jacobs syndrome yesterday. Anyone else out there with experience of this chromosome disorder?
    rqs1983 rqs1983 31-35, F Jan 5

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    i am 26 and i have pica...am addicted to the smell of sand,cement,chalk,car fumes and dirt.i always enjoy sweeping dusty areas because of the smell.I've been doing it since...
    Efyamansa Efyamansa 26-30, F Jan 8

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    Hi there! My son is 3 months old and he has wpw syndrome. Since he was born he had SVPT two times in 2months...and when the doctors changed the therapy to Amiodarone he is stable...
    snegulka123 snegulka123 26-30, F 1 Response Jan 9

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    Hi Everyone, I just wanted to share my story with everyone! My story is a lot similar to a lot of yours out there. But I just found out that I have Swyer Syndrome. It was one of...
    kaylababy95 kaylababy95 18-21, F 1 Response Jan 13

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    I respect the sanctity of marriage. honor the vows and the ever after.It never occurred to me that my marriage will go to the drain. We had great sex. I thought it was the core of...
    4BlackForest 4BlackForest 36-40, F 2 Responses Jan 14

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    Funny life I live...I married a woman just like my mother. She was recently diagnosed with Asperger's Syndrome after my son was diagnosed. I realize now that I am a NT who has an...
    Traveler316 Traveler316 41-45, M 2 Responses Jan 16

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    Hi, my name is Sally. I am 45 years old and all through childhood was simply told I just had an eye condition. The doctors never knew how to diagnose it or what to call it so it is...
    ssimpson69 ssimpson69 41-45, F 1 day ago

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    I was diagnosed with POTS when I was around ten. I have been on fludrocortisone (florinef) and atenelol ever since. My husband and I are wanting to get pregnant, and my...
    kdav12 kdav12 22-25, F 2 Responses Dec 27, 2014

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    I don't have a sibling with Asperger's . I was the sibling with Asperger's . When it was necessary my sister did what was necessary . She loved me and corrected me .. She knew that...
    TheRebelFaction TheRebelFaction 51-55, M 1 Response Dec 29, 2014

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    It's called "DMS" or Dirty mind syndrome, when everything you hear your brain automatically thinks of something dirty. Heart this if you have DMS
    chasetheweirdo8 chasetheweirdo8 13-15, M 2 Responses Jan 2

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    My son was diagnosed with myelodysplastic syndrome in 2012 during the summer before his senior year of high school. He had a bone marrow transplant and nearly died twice in the...
    lynnieruns lynnieruns 41-45, F Jan 4

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    I'm 21 and I have pica. I love the taste and texture of paper from cardboard, some types of tissue paper and other types of paper. It started when I was a baby, my mom noticed me...
    bunny413 bunny413 18-21, F 1 Response Jan 5

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    I was diagnosed bk in 2005, I eat flour right out of the bag.. I really wanna stop because I am eating it more and more I am up to 4 lbs a week I know its doing something to my...
    vishlia vishlia 31-35, F Jan 6

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    When my son was born by emergency c section, my pituitary infarcted and about 90% is gone. I have an empty sella. I could not breast feed because I did not produce any milk. It...
    hypomom hypomom 46-50, F Jan 7

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    When my son was born by emergency c section, my pituitary infarcted and about 90% is gone. I have an empty sella. I could not breast feed because I did not produce any milk. It...
    hypomom hypomom 46-50, F 1 Response Jan 7

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    My brother is Transgender, when my brother and i were little our parents got divorced and we had to move miles and miles away from our home with our mum, as we got older my brother...
    Hollie9 Hollie9 16-17, F 2 Responses Jan 8

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    The invisible illness. We suffer terrible symptoms that, though often aren't life threatening, greatly handicap us and begin to take control of our life. Yet to most people we...
    rbeccalynn rbeccalynn 18-21, F 3 Responses Jan 8

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    Misophonia literally translates into 'hatred of sound,' and I have it. A misophonia sufferer has certain 'trigger sounds,' that are generally quiet, soft and repetitive, and most...
    Ceredwyn2000 Ceredwyn2000 13-15, F 1 Response Jan 8

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    well hello. .....this is my 1st post. I just wanted to say thank you to everyone who has kind words and understanding. I have a rare genetic disorder called ehlers-danlos syndrome...
    kathyeds kathyeds 36-40, F Jan 12

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    Ok so here goes, I was diagnosed with PCOS in July 2014 and I feel its about time I shared my story and hopefully hear from people who feel the same way. After searching through...
    genna genna 22-25, F 1 Response Jan 12

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