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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 was diagnosed with Chrons in 2006, when I was 21, after immediate surgery to remove a ruptured abscess that had formed. From the moment I woke up in recovery to now, 8 year later...
    SamathaA SamathaA 26-30, F Sep 30

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    I am a 42 year old woman. Since June, I had a tough day, I started to have discomfort in the left side of the neck and jaw. I thought that one blame wisdom teeth which I had to...
    StellaAlex StellaAlex 41-45, F Oct 8

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    Up late can't sleep... Hurts to stand up move my arms lay down. I hate this disease. Tired of trying to be strong... Feeling alone... Tired of explaining what people who don't...
    MsAnonymous1 MsAnonymous1 18-21, F 2 Responses 6 hrs ago

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    I have HS for 23 years now....before there was a name to what I had, I was too embarrassed to talk about it to anyone. My family doctor told me this was due to not cleaning myself...
    MsUnderstanding MsUnderstanding 31-35, F 3 Responses Sep 24

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    I was diagnosed 2 weeks before my 18th birthday through an ultrasound taken after contracting a very nasty kidney infection. At my age I have no real noticeable changes, just...
    theinevitablechange theinevitablechange 18-21, F Oct 11

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    So yesterday, I almost made it through the day without realizing what day it was. Almost. Then when I was watching the nightly local news there was a segment talking about an early...
    Aimee17 Aimee17 41-45, F 1 Response 6 days ago

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    I'll tell you who's fult it is government science it's them messing with there damn tubes trying to fined cures they end up making worst diseases
    Wolf267 Wolf267 13-15, M 2 Responses Oct 9

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    And she tries to make me feel bad about the fact that I haven't made an effort to talk to her in four years (I had an awful childhood because of her). She has apparently been...
    haroni haroni 22-25, F 1 Response Oct 2

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    polycystic kidney disease runs through my dads side of the family. I was diagnosed 4 months ago when my menstrual cycle was not right I had a ultra sound and they found cysts not...
    chlo3ann3 chlo3ann3 13-15, F Oct 4

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    I've always suffered from anxiety and thoughts and worries that would pop into my head at random. They used to revolve around disease or paranormal/religious thoughts, and even...
    Patronusmagic Patronusmagic 18-21, F Oct 8

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    I was diagnosed with Crohn's in June of 2014. I am having one of those days where I feel like the disease is leading me around by the nose. I try to keep my optimism but I...
    craftymom24 craftymom24 41-45, F Oct 12

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    I was diagnosed with mild carpal tunnel 5 years ago. I've been able to cope fairly well with braces and pain medicines up until the last few months. I changed departments and I'm...
    sewingmojo sewingmojo 41-45, F 6 days ago

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    Today I stopped by an saw my mother who has Alzheimer's disease and my father has dementia. I have been trying to find them an assisted living center that they can move into...
    ColumbiaTiger ColumbiaTiger 41-45, M 4 Responses 5 days ago

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    I go through phases with Parkinson's disease. At times I feel lucky that I have this and not something that will outright kill me. Then there are other times, like now, where I...
    LifeinWoodinville LifeinWoodinville 41-45, M 5 days ago

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    Hey ! I have had this disease since I was 9 years old. I am 22 now. I was sick for a large amount of my childhood. I been in remission for 7 years. I have been experiencing this...
    evermoreme evermoreme 22-25, F 2 days ago

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    my name is nathan and i learned about this site from a parent at a children's hospital support group. i have a very sick son. i am going to give a little background info to give...
    singledaddy101 singledaddy101 31-35, M 1 Response Sep 29

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    I've had HS for 11 years now, got it when I was seven and am going on 18 now. I'm in college, away from my family, and i have never allowed HS to control my life more than it...
    bel1196 bel1196 16-17, F 3 Responses 2 days ago

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    I don't know if I'm here or there. I scream at people after I tell them I love them. I feel like I'm spreading my disease to the people around me. They keep trying to push around...
    RexxTheDinosawr RexxTheDinosawr 18-21, F Sep 24

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    If a Ghost says ''Boo Who'' does that mean it has Alzheimer's Disease?
    lalalagirl40 lalalagirl40 41-45, F 4 Responses Sep 30

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    I had a dream that all diseases were cured in a week. Population skyrocketed.
    dirtydarkness dirtydarkness 26-30, F 5 Responses Oct 7

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    Due to an Autoimmune disease and constant swelling of legs and feet and all over I've gone Gluten free. It's only been 5 days and 600 bucks later but no more swelling. The...
    Kindal Kindal 46-50, F 3 Responses Oct 10

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    When I was born Around 10 times as a toddler because of unhealthy weight and some kinda blood disease When my brother pushed me down the stairs When I broke something in my arm...
    ColourfulDreams ColourfulDreams 13-15, F 5 days ago

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    CONFESSIONAL A priest was being honored at his retirement dinner after 25 years In the parish. A leading local politician and member of the congregation was chosen to make the...
    expressomarkie expressomarkie 46-50, M 1 Response 4 days ago

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    I am sick, but not of a very serious illness. Still, up to now they told me it is not curable, and I have to live with it my whole life. My whole digestive system is ****** up, my...
    Serenahil Serenahil 18-21, F 1 Response 2 days ago

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    I am a 44 yr old male who passed my first kidney stone when I was 12 and I was diagnosed with Medullary Sponge Kidney in 2004 when I had to give up my job as an X-Ray Tech because...
    stoner2 stoner2 41-45, M Sep 23

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    I was diagnosed at the age of 11. It is now just a few months shy of 10 years. Been a long and bumpy 10 years filled with medications, both crazy and fantastic doctors, days of...
    happyinmyskin happyinmyskin 18-21, F Sep 24

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    I used to be a very happy person. In the last 4 years I have lost so much of myself that I don't know if I can ever find me again. I married my second husband and thought we would...
    GrannyC4 GrannyC4 46-50, F 1 Response Sep 24

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    Just recently I was told by a cornea specialist that he thinks I have tspk. Go back to see him next week. After painful hours of reading about this "disease" especially here on...
    smilebrite smilebrite 41-45, F Sep 24

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    The ice cold chill from my single pane window woke me from a dead slumber. I lay in bed cocooned in the down comforter listening to the rain pitter patter outside. The slate grey...
    writingmyrelease writingmyrelease 26-30, F 6 Responses Sep 25

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    My brother and mother were diagnosed with schizophrenia at about the same time when I was around 9. I don't remember much from that time but I miss them. I wish I could have my...
    sighted sighted 22-25, M Sep 27

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    ok so in my fat fantasy it is based in the future, where obesity is accepted by everyone and there is medicine and stuff to make sure you dont die or have diseases and stuff like...
    cookie2468888 cookie2468888 18-21 1 Response Sep 29

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    I've only told one person about this my entire life, and now that person is no longer in my life yet even then, I didn't tell him the whole truth. Such is my disease. I am a...
    FireCoyote FireCoyote 26-30, F 1 Response Sep 30

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    I been suffering from this disease for years now.. I was 13 when it started. All I want you to know and to never forget is that you are not alone. Apart from that our pain will...
    alwaysshine alwaysshine 18-21, F 1 Response Sep 30

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    "I am a great soft jelly thing. Smoothly rounded, with no mouth, with pulsing white holes filled by fog where my eyes used to be. Rubbery appendages that were once my arms; bulks...
    TheSpookyPotato TheSpookyPotato 18-21, F Sep 30

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    as "a child", I'd get Excruciatingly PAINFUL headaches.... From the presence of Nicotine. I wasn't "as knowledgeable" Then about Second Hand Smoke as I am NOW.... so I'd 'Wonder...
    desireindisguise desireindisguise 56-60 1 Response Oct 2

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    i have never heard of this disease
    mstud17 mstud17 22-25, F 1 Response Oct 4

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    I was 14 when I found out that not only i have a cyst on my ovaries which was bigger than my actual ovary, I also was diagnosed with polycystic kidney disease.
    chlo3ann3 chlo3ann3 13-15, F 1 Response Oct 4

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    There is one person in this entire world who I care for more than life itself. He is a bright spark a star a flame that warms and lights my entire existence. But I am selfish and...
    LittleBirds0827 LittleBirds0827 36-40, F Oct 4

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    October 3, 2014 Today was not a very good day for me at all. It began pretty bad, and ended in a not so good fashion. It all started out the day prior, a co-worker’s pulmonary...
    jjoe01 jjoe01 41-45, M 3 Responses Oct 4

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    Im new to this site...i have a son with HD and GDD, he is 3yrs old now, his been through a lot with 6x surgery 6x episodes of enterocolitis, his last hospitalization was january...
    jamilavictoria jamilavictoria 31-35, F Oct 5

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    I have always been attracted to the extremes. Which, I guess, also helped determine my choice of dog. My pet Chihuahua died prematurely of a rare kidney disease when he was 4. I...
    blondevanillaspice blondevanillaspice 13-15, F 1 Response Oct 5

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    Would you kill someone to end world hunger? What about to cure disease? To cure AIDS? If you would kill one then would you kill two? Of course the answer is yes. So I ask you this...
    SecNotSure SecNotSure 31-35, M Oct 5

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    Hi, I don't know if this forum is still used, however, I wanna share my story with you guys. I was diagnosed with UP when I was 2. The doctors all said that there is no cure, we...
    RandomUsersSuffering RandomUsersSuffering 16-17, F Oct 6

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    Hey I'm Katie, I'm currently 14 years old and I have CRMO (chronic recurrent moltifolco osteomyelitis) I was diagnosed when I was around eight years old. crmo is a rare bone does...
    UnknownToReality UnknownToReality 13-15, F 1 Response Oct 6

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    I have this too. I was not diagnosed with it until 2014 but have been experiencing these symptoms since October 2008. The doctors all told me it was eczema. I have used every over...
    Rosalindjts Rosalindjts 26-30, F Oct 7

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    Hello! How is everyone doing? I recently discovered that my skin-eating is an actually disease! I thought i was the only in the entire world because how abnormal is it to eat your...
    shadowhunter221 shadowhunter221 13-15, M 1 Response Oct 7

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    I was diagnosed with herpes about a week ago and I am still trying to figure out how I feel about it. I really am putting an effort to have a positive attitude about this whole...
    Osoph Osoph 18-21 12 Responses Oct 8