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I Have Krabbe Disease

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

    I just turned 20 and when i was around 18 years old i was told i have a pituitary tumor and Addison disease, and low growth hormone and low thyroid. I also lost my side vision due...
    kz141632 kz141632 18-21, F 1 hr ago

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    Want to have a baby before 35 because Female fertility starts to decline at the tender age of 27; by 35, a woman is considered to be "of advanced maternal age," a senior citizen...
    tangledlove tangledlove 26-30, F 2 Responses 1 day ago

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    which means I actually don't have it. ppl who have schizophrenia don't "think" they have it. They don't even know they have it! so, at least I can distinguish my paranoid delusions...
    StreetgirlnamedDesire504 StreetgirlnamedDesire504 36-40 1 day ago

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    I am 49 and was originally diagnosed with keinbochs disease in my non-dominant hand about 15 years ago. I was diagnosed when I was in stage II. Too late to try any bone saving...
    kbjunkie kbjunkie 46-50, F 1 day ago

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    I doubt I have Fibromyalgia, I have been suffering from migraine since childhood.. I always feel tired, fatigue and dizzy. The tiring feeling is always with me and it increased...
    dare86 dare86 26-30, M 2 days ago

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    It's been it's been about 8 years now that I've had lymes. It's been hell. What more is there to say?
    0210love 0210love 18-21, F 3 days ago

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    I fell in love... and just after got sores.... I got extremely high fevers and pain as well. but with this all being said I'm still waiting for my test results praying to God that...
    nomorepain898 nomorepain898 16-17, F 1 Response 4 days ago

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    It's really amazing that am cured of HERPES by a herbal medication. Oh is by this time last year I start feeling bad about my life, I feel pain everyday of my life but am very...
    TEGA32 TEGA32 26-30 3 Responses 4 days ago

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    Every power is alcoholic. Money property and prestige goals. Those are societys disease And how the wealthy led us wrong Going all the way back to wed forced.
    Converted Converted 46-50, M 4 days ago

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    The invisible pain. No one believes the level of pain this chronic disease causes.. I hate it so much.. being in pain on and off since 20 after acute pancreatitis I spent 7months...
    stefx85 stefx85 26-30, M 4 days ago

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    I am 23 years old and a week ago it was confirmed that I have ankylosing spondylitis.... My WHOLE life it's always been a possibility, my father has it and over his 50 years of...
    AlRoberts AlRoberts 22-25, F 5 days ago

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    I'm a 15 year old girl who has dermatillomania..I just really need someone who's close to my age to talk too who suffers with this disease like I do. My parents don't get it and I...
    sadiegracee sadiegracee 13-15 1 Response 5 days ago

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    RABIES DISEASES God bless Dr. Adagba for his marvelous work in my life, I was diagnosed of RABIES DISEASES since 2010 and I was taking my medications, I wasn't satisfied i needed...
    markrobbin111 markrobbin111 41-45, M 5 days ago

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    I have sufferers since May 2015 with pilonidal disease and it has been a really rocky road 😔 I would love to speak to anyone who has been going through the same/similar things...
    Kdnt Kdnt 18-21, F 6 days ago

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    My poor baby has autoimmune disease...my brother rescued him from being beaten by a bunch of kids and I've had him for about 2 years now and just love him to bits and now he's in...
    LilyAntoinette LilyAntoinette 18-21, F 6 days ago

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    How ironic, lupus is known as a woman's disease. 90% of all patients are women. 70 to 80% are black and ethic groups. And 20% are caucasion women. And 10% are male with the same...
    victoriasize6 victoriasize6 51-55, M 6 days ago

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    I considered posting this in an eating disorder category. But I really don't want to call it that. It feels like a bad word or disease. But I've struggled with this since I was...
    DeIuxedEdition DeIuxedEdition 18-21, F 1 Response 6 days ago

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    methacillian resistant staphylococcus aureus (mrsa) im not quite surr how i contracted it? either working in a hospital environment, or being a patient? this is a resistent strand...
    StreetgirlnamedDesire504 StreetgirlnamedDesire504 36-40 a week ago

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    The doctors have diagnosed me with Spino Cerebellar Ataxia type 14. This means nothing. I don't trust the diagnosis. You see, I am 45 and have seen too many doctors for me to even...
    NMDewey NMDewey 41-45, M 1 Response Aug 24

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    I was recently diagnosed with ET last February. My platelet counts were in the 700 range then. I currently live in Japan for work and have no other conditions besides high blood...
    Look4BeautyWithin Look4BeautyWithin 31-35, F Aug 24

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    its important to get checked out and monitor. i not only had hyperthyroidism but it was caused from graves disease witch i inherited from my parents. i was severly hyperthyroidic...
    stormofself stormofself 18-21, M Aug 24

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    Hello! I am doing a 10k run on October 4th 2015, for british heart foundation. I am doing this because i am a survivor of a heart disease, and would like to raise awareness and...
    amylouexoh amylouexoh 16-17, F Aug 23

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    Hello! I am doing a 10k run on October 4th 2015, for british heart foundation. I am doing this because i am a survivor of a heart disease, and would like to raise awareness and...
    amylouexoh amylouexoh 16-17, F 4 Responses Aug 23

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    Hello! I am doing a 10k run on October 4th 2015, for british heart foundation. I am doing this because i am a survivor of a heart disease, and would like to raise awareness and...
    amylouexoh amylouexoh 16-17, F Aug 23

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    So I contracted hepres about 2 yrs ago from an ex boyfriend who had it and didn't tell me. I actually found out from someone else he was seeing at the same time. I haven't...
    luethel luethel 22-25, F 1 Response Aug 22

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    I was diagnosed with DM in 2009 along with Celiac's disease, I guess I didn't realize what this disease was or how serious it was, at the time the Celiac's was my bigger concern...
    Jill2006 Jill2006 51-55, F Aug 21

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    Hi there my name is Nate And I'm a 25 year old male With cerebral palsy, On August 14 2015 I was diagnosed with Hashi modos I was shocked Because I have been a bodybuilder for the...
    natecr natecr 22-25, M Aug 21

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    have a extremely rare genetic brith defect and neurological disease that causes me to incontinent even surgery can't correct it i
    masterLLL masterLLL 56-60, M 1 Response Aug 20

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    I have to remember. It's not like in stories where every ending has been set, chosen for them by the author, where the ending will always turn out the way "it should". In other...
    Juls4 Juls4 18-21, F Aug 20

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    i was just diagnosed with ulcerative colitis last month. i'm new everything and i understand some days it's hard on others. if anyone needs someone to talk to feel free to message...
    alicia0090 alicia0090 22-25 2 Responses Aug 19

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    Hi, I'm Mark and I'm an alcoholic, at the very beggining on my road to sobriety, those were the words that were the hardest to say, it was hard for me to admit I had a drinking...
    aerosnz aerosnz 56-60, M 2 Responses Aug 19

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    It's really hard to deal with the fatigue the ache, the pain, depression, Anxiety, the emotional issues that go with it. I'm single I don't no if I will find someone to love me...
    dkl79 dkl79 36-40, F 2 Responses Aug 19

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    I am 48. 15 years of this disease. Have reached out to a psychiatrist and am on different meds. I feel happy and positive for the first time in a LONG TIME. And I have not vomited...
    FattaBiggs FattaBiggs 46-50 2 Responses Aug 19

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    I haven't lost him yet. But what good will 2 months do? He's the kindest man ever. He never cared for himself, only others, which got him in such a situation. Why?! Why did he have...
    CindyLEvans CindyLEvans 16-17, F Aug 18

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    Hello, My name is Dorsa. I am an intern with Rare Genomics Institute and RareShare this summer. We are helping research information on rare disease and I am looking to interview...
    dorsaa dorsaa 18-21, F Aug 18

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    Not to self-diagnose, but I'm pretty sure I've got a severe case of foot-in-mouth disease.
    Sicarium Sicarium 36-40, M 2 Responses Aug 18

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    For as long as I can remember, I have been using food as a means to cope with difficulties. That's why I was overweight even as a kid. Whenever I felt bad or my parents were angry...
    TheVisionBleak TheVisionBleak 26-30, F Aug 18

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    Sometimes I wonder if i died the next day she would care. I just got done quitting my job that was worth staying to go home to deal with college and with my ex. She was once a wife...
    JusDave JusDave 18-21, M Aug 17

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    Stupid decision, random strangers. Waiting on test results. They performed oral on me and I think that's how I got it. Sooo, HSV-1 on genital area? Who knows, should know from the...
    madeofstars madeofstars 31-35, M 1 Response Aug 16

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    It's been a rollercoaster for the past two years. Some days I feel great and I can forget for a while. It's funny because people who don't understand are the one's full of useless...
    bell084 bell084 31-35, F Aug 16

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