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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'm 29 y.o. now. Living in eastern Europe. For 8 year I'm aware that I have Lyme Disease. 8 years ago my neurological (only - no joint pain) blew up my life. I was a second college...
    someSadMan someSadMan 26-30, M 1 Response 4 days ago

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    I know what you're going through and I'm so sorry that you are. When I read this group and the postings in it, I cried the entire time because your experiences are eerily close to...
    smgreen1703 smgreen1703 22-25, F Aug 24

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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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    Can someone here explain to me the kind of pain and location they had/have during issues with their liver? And any other symptoms? I have been having mild but persistent acking...
    sugarcakes143 sugarcakes143 18-21, F 3 Responses 4 days ago

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    I found out I have Celiac in 2008. I cannot eat bread, pasta, or cereal that contains wheat, barley, or rye. Anyone want to share recipes for gluten free?
    jrice356 jrice356 46-50, F 1 Response 12 hrs ago

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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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    I was recently married and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results...
    Ilovetosing626 Ilovetosing626 26-30, F Aug 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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    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 Aug 15

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    My mom told me once that her disease made her feel like an octopus. I said what do you mean? She said her arms and legs feel like they are out of control. She wants me to take her...
    WildHydrangeas WildHydrangeas 26-30, F 2 Responses 6 days ago

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    I was diagnosed about 3 years ago. Been sick for at least 5 years, probably longer. I have tried many meds and still can't get my disease out of an active state. Not sure what...
    Enaed Enaed 46-50, F 4 days ago

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    I have seen a lot of people on EP and in real life throwing this word around like a hot potato. The two most inappropriately used words in this generation, in my personal opinion...
    AlexandriaDark AlexandriaDark 18-21, F 3 days ago

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    I have had bloating and gas, alternating with constipation and hemorrhoids, and was told I had irritable bowel syndrome, for several years now. in 2006, I went through some very...
    gastricwoman gastricwoman 51-55 2 days ago

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    Did anyone else contact this disease right after receiving vaccinations? I contacted this disease one week after receiving TDAP and Shingles vaccinations.
    Bluesntennis Bluesntennis 66-70, M Aug 22

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    My dad was recently diagnosed with MELAS. He is 48 years old. He has been in and out of the hospital due to seizures and what we thought were strokes. He suffers from hearing loss...
    ering08 ering08 22-25, F 7 hrs ago

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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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    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 Aug 17

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    I have polycystic kidney disease. The largest cyst measures 6cm in right and 5cm in left kidney. the latest scan report says that 'corticomedullary differentiation lost in with...
    aneetasree aneetasree 31-35, F Aug 22

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    Yesterday, something happened to me that scared the crap out of me. For more than ten years, I have had Ménière's disease. I was shopping in Target when I was suddenly hit with...
    scottdavidsmith scottdavidsmith 46-50, M 1 Response Aug 22

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    I contracted q fever while visiting farms looking for a baby goat for my son for Easter in the spring of 2012. I was fatigued and my joints hurt something terrible. When it was...
    myfamilymatters myfamilymatters 36-40 5 days ago

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    I first started losing my hearing when I was 13. I suffered an abrupt and massive hearing loss literally over night when I was 13, and I had to be fitted for a hearing aid in my...
    Runningagainstthewind Runningagainstthewind 22-25, F 3 days ago

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    I'm tired of struggling with this condition and everything it entails. I was dismissed from my doctor's office because I "dared" to have a thyroid ultrasound somewhere else and...
    deleted deleted 26-30 1 Response 3 days ago

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    i went to the doctors one day for a physical, the lady sent me to endocrinologist. he took my blood work and said my levels were very low and i was too take a pill of 88 milligrams...
    mlnoon96 mlnoon96 18-21, F 7 hrs ago

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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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    I was ready someones experience and they said they were the only one's around with no tattoos. After watching many Sci-Fi movies in my time I am reminded of low budget Canadian...
    starduster79 starduster79 51-55, M 2 Responses Aug 8

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    I look like I have some sort of strange disease at the moment.. But I'd just like to take the time to sit and examine my pale complexion. I can't tan. I sunburn but don't get...
    Pxppunkprincess Pxppunkprincess 16-17, F 1 Response Aug 8

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    INTERVIEW WITH PATRICK CALLAHAN, PARANORMAL EXPERIENCER By Deanna Jaxine Stinson, HPI Paranormal Diva Haunted and Paranormal Investigations - HPI International https://www.facebook...
    PaulDaleRoberts PaulDaleRoberts 51-55, M Aug 9

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    Hi there, I am 52 and have a little boy who is 10 and a husband. I am feeling very low at the moment. I used to be very physical, skiing, dancing, the gym. I am sitting here...
    felinemoonbeast felinemoonbeast 46-50 Aug 9

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    In October of 2011, my husband and I found out that we were going to be having another baby. We were scared and excited, since just 2 months before we had lost our first daughter...
    Krissysheart Krissysheart 22-25, F Aug 9

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    So this is going to be a TMI post. So if you care read on but be warned I'm about to share an issue I've had for about a year and four months now. I used to work at a Transport...
    Mcgregor117 Mcgregor117 18-21, M 2 Responses Aug 10

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    I think diseases are population control tactics. I think presidents serve as mascots to our country, but like mascots...they don't really do anything but wave and try to make you...
    Thediary Thediary 26-30, M 2 Responses Aug 10

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    I was told I had keinbock's about 12 yrs. ago had surgery to shorten bone in my right arm. That helped with pain for about two yrs. so I stayed working but since then pain has...
    icequeen029 icequeen029 31-35, F Aug 11

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    I'm currently having a really bad flareup I'm my armpit. My previous flareup was almost healed and I woke up yesterday morning with a golf ball sized beast in the front of my...
    Lunaro23 Lunaro23 22-25, F Aug 11

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    I have pretty bad acne on my face, now been spreading to my neck and chest. It's awful because I'm staring into early adulthood and I'd like to grow out of it soon, but I think...
    NoraDysphoria NoraDysphoria 18-21, F 2 Responses Aug 12

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    Iv been blessed to have an amazingly healthy half heart! I have the most wonderful family a great loving boyfriend and working hard in ministry and heart disease!
    Klcataldo Klcataldo 18-21, F 1 Response Aug 12

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    I was just diagnosed with hsv 1 and 2 and I am completely destroyed. I would have never thought this could happen to me. I'm afraid to touch myself anywhere with fear of spreading...
    taintedglitter taintedglitter 26-30, F 3 Responses Aug 13

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    I'm 16 old and just got the results that I was given herpes by my last sexual partner, age 24. I'm only 16 and will never be able to run from this. I feel like everyone knows. I...
    ofwkatie ofwkatie 16-17, F 4 Responses Aug 13

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    I have had raynauds since at least 4 years old, but I didn't know what it was until about 13yrs old. This disease has been so frustrating because I feel like nobody understands it...
    allisondela allisondela 18-21, F Aug 14

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    I have been in a relationship for only 3 months with my boyfriend. We are both in our mid 30's and currently trying to work on a long distance relationship. In the first month...
    1234dogma 1234dogma 31-35, F 3 Responses Aug 15