Post

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

    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

    Your Response

    Cancel

    Related Experiences

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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 5 Responses a week ago

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 8 Responses Mar 27

    Your Response

    Cancel
    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

    Your Response

    Cancel
    I personally don't have CFS but my mother has it and it's been one of the most difficult things to deal with on a daily basis. I have determined that my mothers stress levels...
    IamLerato IamLerato 22-25, F 1 Response Apr 14

    Your Response

    Cancel
    I started with pain at the first of January. Woke up one morning with the feeling that I was being stabbed in the shoulder with a knife. Used heat/ice thinking I had pulled a...
    msv123 msv123 51-55, F 2 Responses Apr 16

    Your Response

    Cancel
    I went to the movie theater today to see Rio 2 (pretty good movie) as my sister wanted me to go and meet two of her friends. And everything was going decently to me, but after the...
    CeruleanWolf CeruleanWolf 18-21, F 2 Responses 5 days ago

    Your Response

    Cancel
    I discovered I had Gilbert symdrome age 36 was a shock never new what it was till I had blood test done I get unwell a lot of the times get bad pains jaundice and everything I...
    sexygirl6 sexygirl6 41-45, F 5 days ago

    Your Response

    Cancel
    I have finally told my parents I have Asperger's! Well, I sent them a brief email, I'm still a tad angry that they weren't the ones telling me, 40 years ago. I shall see what...
    Teab Teab 41-45, M 1 Response 4 days ago

    Your Response

    Cancel
    I have had RLS for almost 40 years. A few years ago, i had to visit my chiropractor and he asked me if I ever tried doing stretching exercises b4 bed. I have tried prescription...
    lakeluver lakeluver 66-70, M 2 Responses 3 days ago

    Your Response

    Cancel
    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

    Your Response

    Cancel
    To be completely honest, I denied it for some time. I haven't actually done any kind of official test, but I have a nurse practitioner and a number of knowledgeable individuals who...
    Kavka Kavka 18-21, M 5 days ago

    Your Response

    Cancel
    HI , Im 24 years old , im a man . the thing about me is i am not quite sure if i have cauda Equina , i didnt have an accident or any truama , my pain first started at my right foot...
    Atrilundy Atrilundy 22-25, M 1 Response 5 days ago

    Your Response

    Cancel
    I get reconstruction surgery July 16th!!! SO excited, but not being able to play field hockey because of it is going to suck. I'm terrified of going under but I don't even care...
    marinagrace marinagrace 13-15, F Apr 9

    Your Response

    Cancel
    Anyone with this won't to talk ? Just diagnosed today and would love to talk to others with it
    Mum2one Mum2one 22-25, F 1 Response Apr 15

    Your Response

    Cancel
    I've been diagnosed now. The lady that did the deed seems rather concerned about my mental well being. I don't know how I feel now I'm officially registered as disabled, I'll post...
    Teab Teab 41-45, M 2 Responses a week ago

    Your Response

    Cancel
    diagnostiqued in late 2012 I'm 41
    steack2 steack2 41-45, M 3 days ago

    Your Response

    Cancel
    I need to get some things under control. So I was looking up some tips in regards to Aspergers, and the comments people left about their spouses/ex's really upset me. I don't want...
    ctav85 ctav85 26-30, F 1 day ago

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 6 days ago

    Your Response

    Cancel
    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 Apr 14

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

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

    Your Response

    Cancel
      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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 Apr 7

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 3 Responses Apr 11

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 Apr 14

    Your Response

    Cancel
    Adding to my previous post - no one around me understands pots, my mum knows I'm ill but gets frustrated at me telling her how I feel and says she is fed up of hearing I'm ill, my...
    potsie2222 potsie2222 18-21, F 4 Responses Apr 14

    Your Response

    Cancel
    She was found dead in her bedroom at 4am yesterday. No news yet with regards to the cause. She was one of those crazy party girls. But there was something wrong. For as...
    NekroNomikon NekroNomikon 18-21, F 4 Responses Apr 15

    Your Response

    Cancel
    I have been diagnose with this last year sept. Experience alot of pain. Exercise helps, and to stay possitive. I know God is withme even in this. I like to hear from others.
    4icelady 4icelady 36-40, F 2 Responses a week ago

    Your Response

    Cancel
    I have a question I don't drink alcohol but for the future (21) since I have pots do I try it or no? Will it mess my system up?
    Megan2020 Megan2020 13-15, F 1 Response 1 day ago

    Your Response

    Cancel
    I have had FMS since I was 8 years old. It gets worse with the years. I've had to give up my dream of having children, a career, a full life. I don't think I can live the rest of...
    softbunny6 softbunny6 26-30, F 6 Responses