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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 got diagnosed about a year ago and everyone's always thought I was always scared do to my bulging eyes turns out I have Graves' disease
    germany100 germany100 18-21, F Aug 12

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    I learned that I had Raynaud's at the age of sixteen after I had been running blue and white whilst running at track practise. All I can say is that the diagnosis was more welcome...
    15konicchr 15konicchr 16-17, F Jul 25

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    i started having panic and anxiety attacks when i was 9. people thought i was being abused i wasnt and didnt know what anxiety was i was 9! it wasnt until i was 23 that a keen...
    ericseamless ericseamless 31-35, M 1 Response Aug 11

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    More truthfully, my 4 year old has Wolman Disease. Does anyone out there have this? Live with this? Have a child that is healthy and living a happy life despite this? I'd love...
    AquaMama AquaMama 31-35, F Aug 4

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    If being awesome was a crime, I'd be serving a life sentence :P Just discovered this phobia: Mephobia - fear of becoming so awesome that the human race can't handle it, and...
    ConcealedWildheart ConcealedWildheart 13-15 1 Response Jul 24

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    I was born with a small right ventricle that doesn't pump so now I am living with half a heart! Stroke survivor, open heart surgery surviver, 3 major heart surgery survivor.
    Klcataldo Klcataldo 18-21, F 1 Response Aug 12

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    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response Jul 24

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    Comprehensive fitness programming represents a coordinated continuum of healthcare management for the prevention of chronic disease and injury, which sets it apart from routine...
    aries3296 aries3296 46-50, F Jul 25

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    Anybody else agree with this? 😔 Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now...
    sarahglass sarahglass 18-21, F 5 Responses Jul 22

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    Hello everyone, I have had to find a place to vent my frustrations and hope that putting my experience into words will help me on my current journey. The lack of support from...
    linrob14 linrob14 46-50, F Aug 4

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    Hello everyone, I have had to find a place to vent my frustrations and hope that putting my experience into words will help me on my current journey. The lack of support from...
    linrob14 linrob14 46-50, F Aug 4

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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    At 12 I started to notice a mood and personality change and have chalked up my sadness, mood swings, lack of interest, and inconsistent insomnia to near comatose states to being a...
    Bobbyckat Bobbyckat 18-21, F 1 Response 5 days ago

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    Looking for people who have server Menieres Disease and has had the shunt surgery on my left ear but now I'm getting in my right ear
    gborron gborron 46-50, F 2 Responses Jul 21

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    I have had this Menieres Disease for 20 years I had the surgery in my left ear 3 years ago where they put a shunt in worse thing I ever did my balance is a bigger problem now I...
    gborron gborron 46-50, F 1 Response Jul 21

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    Hyperthyroidism, especially when it is misdiagnosed or let to run rampant, is a very dark disease. It really messes with your mind and when you combine it with the incredible...
    hcafaculty hcafaculty 46-50, M 1 Response Jul 21

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    Two and a half years ago I was diagnosed with Ulcerative Colitis. Then a year ago it got bumped up to Crohn's Disease. It's funny I always knew something was wrong with me since I...
    Starkillera Starkillera 22-25, F 5 Responses Jul 22

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    I was diagnosed 3 months ago after 10 long years of having this disease and not knowing what it was and never having a doctor that could tell me. The day I found out I was relieved...
    Lunaro23 Lunaro23 22-25, F 1 Response Jul 24

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    I have neurological Lyme disease and everyday is a struggle. My memory is so bad I forget where I and people, I also get really bad brain fog and have asperges since being...
    BriGrace BriGrace 13-15, F 2 Responses Jul 25

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    My family has a history of diseases, especially cancer. These diseases were what left my mother and her siblings orphans at young ages. I knew that one of my grandparents was...
    JumpingTomatoes JumpingTomatoes 16-17 Jul 30

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    After a childhood filled with severe pain, day after day in bed..... countless visits to Hospitals...Mri scans...specialist appointments which amounted to nothing, no one could pin...
    thataussie thataussie 36-40, M 2 Responses Jul 31

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    I have had the disease since I was little, it didn't bother me much as a child. My favorite thing to do as a kid was swim. All my birthday parties were at the pool ( I didn't have...
    Iaquinto Iaquinto 22-25, M 1 Response Aug 3

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    I am 37 and have been diagnosed with MSK for 10 years now. I have two fantastic boys ages 16 and 17 and a very loving husband who is always ready to go to take over when I am sick...
    stonergirlstwins stonergirlstwins 36-40, F Aug 11

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    I'm not sure if I'm even reaching the right support group. I'm 32 years old I have just been diagnosed with Mixed connective tissue disease a few months ago, I have had 3 grand mal...
    monim23 monim23 31-35, F Aug 11

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    I'm on Day 4 now. I noticed some rashes three days ago but ignored it. I thought that some insect may have bitten me. I was without symptoms in general. The other day, I noticed...
    mareliberum mareliberum 26-30 2 Responses Aug 11

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    March, 2013 I was told I had polymyositis. My Doctor said I was using 20% of my muscle. I lost my job and living on SSD. My treatments are IVIG and predisone. When I first...
    Numberplay Numberplay 46-50, F 3 days ago

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    Hello. I was diagnosed with A.D. 5 years ago, and 5 years before that I was diagnosed with Type 1 Diabetes. I am currently 20 weeks pregnant (and it has been terrible thus far!) I...
    jenyeaz jenyeaz 22-25, F Jul 21

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    Well I had my first unplanned trip to the hospital on Saturday. Basically the heart murmur I have had for awhile finally did something bad and I ended up being wheeled into an...
    MattsShadow MattsShadow 18-21, M Jul 21

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    I am a 46 yr young female who was diagnosed initially with ET during a random blood test - platelets 1mill ++ then with MF a few weeks later through a bone marrow biopsy. I took...
    jamieh3 jamieh3 46-50, F Jul 22

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    4 months I had rotator cuff surgery with a full recovery expected. Needless to say after several phydical therapy tratments and pain meds I had little to no relief. Finally after...
    fancyface19 fancyface19 46-50, F Jul 22

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    So people always ask me why they have trouble loosing weight and a hard time wanting to eat the right way. The best way to start on that rewarding journey is to get your hormones...
    CaseyHiemenz CaseyHiemenz 18-21, M Jul 23

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    I've always struggled with my weight and never being the skinny girl. I used to pretend it didn't bother me, and I was able to deal with it that way. A year go I started dieting...
    katey907 katey907 22-25, F 1 Response Jul 24

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    I was diagnosed when I was 10, almost 10 yeas ago, in a few months, I'll be having this disease for half my life.. And it's really hard, sometimes I just want to give up, sometimes...
    akespinosa akespinosa 18-21, F 1 Response Jul 26

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    I have never had the chicken pox. I had the mumps and the measles but not the chicken pox. And now that my daughter has chicken pox, it frightens me that I'll get infected, which I...
    mareliberum mareliberum 26-30 2 Responses Jul 26

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    Was with my fiancé for almost a year and he found out he had it and unknowingly passed it on to me but I didn't have symptoms until recently this week. He did infect me when he...
    NavySailor2012 NavySailor2012 18-21, F 3 Responses Jul 26

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    My name is Garrett and I am 23 years old. I was diagnosed with Type 1 Diabetes when I was 12. Every day since then insulin and needles have been an integral part of my life. It's...
    GarrettTheGinge GarrettTheGinge 22-25, M 1 Response Jul 26

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    so I've had gum disease for pretty much my whole childhood all the way to now; and last year it got real bad, part of my gums had swollen and I didn't know what to do! my grandma...
    gypsykk gypsykk 18-21, F 2 Responses Jul 27

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    I work in a VA hospital which makes the possibility of seeing death a daily fact of life. Before that I was a medic in a combat zone, again a daily chance of witnessing death...
    hawkeye67 hawkeye67 46-50, M 1 Response Jul 27

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    Like a diseased tree, I've cut off the final toxic branches of friendship, which has left me feeling a bit desolate and depleted. I am not talking about online friendships. I'm...
    PlasticRobot PlasticRobot 36-40, F Jul 28

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    My greatest fear is not being able to have children. Ever since I was little I knew that I would want to be a mum someday. Then I started having strange nightmares about babies...
    Starkillera Starkillera 22-25, F Jul 29

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    I remember when I thought about overdosing.. I still do.. I'm thinking about it right now. Most people when I tell them this they say stop being selfish and trying to take your...
    SPNPLL SPNPLL 16-17, F 1 Response Jul 31

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    I have had morphea since 1965 at the age of 14. Back then it was extremely rare to find a doctor who even knew what morphea was. My morphea started as a round spot on my wrist...
    Muffygirl Muffygirl 61-65, F 1 Response Aug 1

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    In 2009 I was diagnosed with pandysautonomia - POTS after getting ill from having a flu shot. It has completely taken everything away from me. I have had problems with my blood...
    Buffy2014 Buffy2014 31-35, F 1 Response Aug 5

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    So im in NC with my NM and also, my father and brother. The only way they could communicate with me is via email. This is a very weird question, but I want to know what you would...
    Misstaco Misstaco 26-30, F 1 Response Aug 6

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    304 million people live in the U.S. One in 25 people will have the disorders associated with 'no conscience' which include antisocial personality disorder, sociopath, and...
    TygerLylly TygerLylly 36-40, F Aug 6

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    304 million people live in the U.S. One in 25 people will have the disorders associated with 'no conscience' which include antisocial personality disorder, sociopath, and...
    TygerLylly TygerLylly 36-40, F 1 Response Aug 6

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