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I Have Muenke Syndrome

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

    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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    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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    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 5 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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    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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    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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    I had a spinal fusion when younger but feel lucky still because my aortic valve which i check on yearly usually has been okay. I didn't have any of the bad problems growing up...
    AvgDudeJ AvgDudeJ 26-30, M 1 Response Jan 13

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    I am a 17 year old girl. I was only recently diagnosed with PS. The doctors in the orphanage that i was in thought it was dextrocardia so they didn't do anything. Only my left...
    Lauraloohoo Lauraloohoo 16-17, F 6 days ago

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    Hi I really can't believe I am going to actually let anybody know this other than my immediate family.... Ever since I can remember I loved to eat baby powder and loved the smell...
    Malele135 Malele135 18-21, F 4 days ago

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    I hate being sick. It makes all my pots symptoms go haywire.
    lynnox lynnox 22-25, F Dec 31, 2014

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    I remember this one particular play at school... I "won" the role of Can Can dancer - they wanted a line of us to perform the Can Can on the stage for some reason. I know I was...
    LoneSouls LoneSouls 26-30, F Jan 3

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    Baking soda omgg ; so obsessed with it
    BigBossLaLa BigBossLaLa 18-21, F 1 Response 6 days ago

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    The uncle I suspect of raping me died this Monday... And memories started to haunt me again. All the things I keep inside... Most of them are about my grandmother. He used to live...
    Mellangela Mellangela 26-30, F 1 Response 5 days ago

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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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    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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    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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    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 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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    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 6 Responses Jan 20

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    Can someone please tell me they're symptoms of polycistic ovarian syndrome x
    iwantababy111 iwantababy111 16-17, F Jan 21

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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 6 days ago

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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 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 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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    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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    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 Jan 19

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    I am bipolar, have suffered with depression and ADD. I know this is not as bad as it gets. I have gotten a lot better by my mental choice and strive to do so. I would like to share...
    atellis11 atellis11 22-25, F 2 Responses Jan 19

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    My daughter is 10 now she she also has PS. We found it when she is probably 1-2, we just could tell something was different on her right side. Luckily she is only Missing the pec...
    alicat333 alicat333 31-35, F Jan 19

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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 Jan 20

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    I been in two hospital and four different doctors because my leg is swollen stiff can't move my toes are ankle and I can't walk, I have a dead frozen leg, and am on crutches the...
    Gold40 Gold40 46-50, F 4 days ago

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    I have had CRPS/RSD since 2002. Initially in left arm following Ulnar nerve transposition for cubital tunnel syndrome, but in 12 years it has spread to both feet/legs and small...
    eticketride eticketride 51-55, M 1 Response 4 days ago

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    I think. its so hard to tell with my aspergers syndrome. I don't express my feelings well. shes okay funny cute and one in a billion but I can easily fall in love with another...
    daniel147 daniel147 13-15, T 5 Responses 3 days ago

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    When you have this it's easy to become absolutely obsessed with things, and that's not easy to deal with, even when I became devastated after finishing a book series that there are...
    Dakurti99 Dakurti99 13-15, M 3 days ago

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