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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.

    Well I was the exact age I am now when I found out I had this disease. I didn't know I had it, I only knew that there was something wrong with me How did you find out about it? I...
    awsome2 awsome2 18-21, M 1 day ago

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    I'm 19 and I have Menieres Disease in both of my ears. My disease has affected my hearing more than anything. I'm half deaf, I cannot hear anything out of my right ear, and my left...
    Gabyy17 Gabyy17 18-21, F Feb 18

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    My Mum has celiac disease . One speck of gluten sends her dashing off to the bogs. So it's a gluten free zone in our household . Actually gluten is a bit like glue . It helps...
    Homejames Homejames 51-55, M 1 day ago

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    After months of stomach aches and losing a ton of weight and looking pale, a doctor finally figured it out. So I was diagnosed with Celiac Disease when I was about 2 and a half...
    SparkleSwirl SparkleSwirl 18-21, F Feb 6

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    It's so hard having celiac disease and no one in my house understands and doesn't take me seriously....nothing hurts more than seeing everyone eat pizza and having fun saying whats...
    glisteningheartz glisteningheartz 18-21, F 2 Responses Feb 6

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    22 years old. Already gone through menopause, why not also go through thyroid disease as well to really make me feel like I am in my 60's. The only young part about me is the way I...
    MyCrookedSmile MyCrookedSmile 22-25, F 4 Responses 6 days ago

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    Me too, I was diagnosed when I was 9 (now I'm 14). I've been on the SCD diet to treat it since I was diagnosed and it's kept me in remission for most of that time. When I have a...
    ellajade ellajade 13-15, F Feb 18

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    Was diagnosed in 2012. It's still grumbling away and appears to be coming back. I can't remember what it feels like to be normal and happy. I'm a different person from who I used...
    Lalassa Lalassa 22-25, F Feb 20

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    Hello people, I am 40 years old I have severe periodontal disease, I am not here for pity, its my fault I have this, poor hygiene in my younger years, smoking unfilterred cigrettes...
    Wakeup56 Wakeup56 36-40, M 1 Response 5 days ago

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    Okay this might going to be a long post Does this ever happen to you that you are living a ****** life and then you are straight transported to cloud 9 then again everything comes...
    eriloves1D eriloves1D 16-17, F 1 day ago

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    I have known since 22 that I have this disease. High BP has been my only symptom. Now I feel as though my torso is crowded. Breathing can be difficult especially after eating...
    panoon12 panoon12 31-35, F 1 Response 6 days ago

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    Positive ways in which having an Herpes can improve your life! Being diagnosed with Herpes/STD can be a 20382014heartbreaking and overwhelming experience. Let’s face it, all of...
    pozoq pozoq 22-25, M Feb 4

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    I know I've written about this before. It's been a while but it is still up there on my profile as an experience. When I wrote that, it was still when my hair was growing out. I...
    Narp12 Narp12 18-21, F 1 Response Feb 17

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    I have a liver biopsy next week to confirm my doctor's suspicion that I have autoimmune hepatitis. I started with strep and mono at the beginning of this year along with being...
    Singer87 Singer87 31-35, F 2 Responses Feb 21

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    Had it since I was about 4 or 5. I'm considering getting a medic alert tattoo, I figure I'll have this disease forever, and it could look cool.
    fireraven23 fireraven23 18-21, M 1 day ago

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    PAN (Patient Access Network) Foundation Launches Financial Assistance for Patients Living with Parkinson’s Disease: http://www.panfoundation.org/news-article-list/365-pan...
    LifeinWoodinville LifeinWoodinville 41-45, M 1 Response a week ago

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    How to Treat Degenerative Disc Disease? (http://luv2sex.theblogpress.com/?p=4071) If you are suffering from any type of back pain, neck pain or sciatica, read on to find out how...
    how2stayyoung how2stayyoung 51-55, M Feb 3

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    Well I thought, for some silly reason, that I was the only person with Parkinson's Disease that had the horrible morning toes problem. Turns out it's more common then I thought...
    LifeinWoodinville LifeinWoodinville 41-45, M 2 Responses Feb 6

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    I have recently been diagnosed with Meningitis/Mycoplasma pneumonia encephalitis. I try to google this disease and BARELY find anything about it. What I do read scares the crap...
    amiedawn419 amiedawn419 36-40, F Feb 11

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    its with me daily has been since I was born - I am different because of it - no one can see it or notice it- its my invisible disease. I look healthy active happy and generally...
    blonde10 blonde10 36-40, F 2 Responses 2 days ago

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    I have known for 3 yrs that I have Hashimoto's but I believe I have had it for 25 yrs. It started during my 2nd pregnancy. My Dr over the years kept treating the symptoms with...
    physio56 physio56 56-60, F 1 day ago

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    For all the AIP sufferers, please check out the Porphyria Foundation they are there to help you deal with this disease. Yes you can get ssi or ssd in my case, ssd. Look up your...
    dee450 dee450 46-50 Feb 8

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    Lyme, CFS, MS??!?!?? I recently was diagnosed with Mycoplasma pneumonia encephalitis/meningitis which from what i understand, goes hand in hand with Lyme. The doctors also thought...
    amiedawn419 amiedawn419 36-40, F Feb 11

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    Hi everyone, I'm 20 college girl student. I've just diagnosed that I have TB and now I'm in medication since October last year. But I'm so afraid and so shy to tell the truth to...
    imegw imegw 18-21, F 3 Responses 5 days ago

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    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses 5 days ago

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    I am scared of my feelings. My boyfriend is visually impaired and he is slowly going blind, yet I love him and stand by him unconditionally. I would be totally heartbroken If I...
    LeavingThePast LeavingThePast 18-21, F 2 Responses 26 mins ago

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    It's been 3 years since my boyfriend left this place, it could be yesterday and it could be an eternity, all I know is nothing will ever prepare you for the sight of a body with a...
    littlesnowyeti littlesnowyeti 26-30, F 2 Responses Feb 3

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    I tell you where it's from Africa That's from where Ebola comes West Side It hides in the suitcase 2 days later It lands in USA I get it from my girlfriend & give it to my dad I...
    TheRoni3456 TheRoni3456 13-15, F 1 Response Feb 5

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    Hi, I can't describe what it is like to find others who understand the pain we all deal with everyday. I am 43, I was given the diagnosis about 15 years ago. Currently, I spend at...
    11061106s 11061106s 41-45 Feb 5

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    The longing for what exists only in your head is my deadly disease that will never be cured. I have to accept I am a dweller in my ideal words and a tourist in reality. Melancholia...
    Danceofhours Danceofhours 41-45, M Feb 7

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    I have Depression, BPD, and oh yeah, anxiety. It's ruined many great experiences and chances in my life. It had closed many doors. I hit rock bottom again and again. In less than 2...
    Vyper9 Vyper9 31-35, F Feb 9

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    Iv had Crohn's pretty much my entire life. I had my whole large bowel out 3 yrs ago, Stoma for a year (thank god it was reversible) but since then I have suffered agonising fatigue...
    strawberryblonde89 strawberryblonde89 26-30, F 2 Responses Feb 9

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    Hello. I have been experiencing symptoms for 6 months now and I was very recently diagnosed with Rumination Syndrome. I am on 20mg of Amnitriptolyn to help cure but there hasn't...
    minmouse614 minmouse614 26-30, F Feb 9

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    During my senior year of high school was the first time I experienced my depersonalization disorder. I'm now 24 years old and still can say I'm suffering from this never ending...
    katejen2 katejen2 22-25, F 1 Response Feb 10

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    And it doesn't go away with time. If you think you have got it, talk to friend who understands you, or with someone who has had trouble dealing with it in the past. Go see a doc if...
    princessodette princessodette 22-25, F 1 Response Feb 10

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    This is the most meaningful song to me. When I heard this song for the first time I was 9, and it inspired me to make a change for myself. I was still a kid, but I already decided...
    SapphicMinion SapphicMinion 26-30, F 3 Responses Feb 10

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    I want to but I can't tell anyone that I have a mental disease. I've been depressed for 13 years and my emotion has been up and down. Some of my friends know this of course but I...
    Kayu96 Kayu96 31-35, F Feb 11

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    I need help! I had a total thyroidectomy Nov. 7, 2014, before I got discharged from the hospital I went into severe hypoparathyroidism/hypocalcemia and stayed in hospital in ICU...
    rymagsnana rymagsnana 51-55, F Feb 11

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    Hello! I am sorry if this is going to be too long. Well like two years ago I worked out a lot (1h/day, 7/week, no warmup, only aerobic) and after like 5 or 6 months when I started...
    iammarymary95 iammarymary95 18-21, F 3 Responses Feb 12

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    I'm a 21 year old male, have had since was 18 but all the doctors said it was eczema for the longest time, until I saw a dermatologist about the lesion on my lip. Every person I...
    Quiet21 Quiet21 18-21, M Feb 12

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    My fiance is in prison an I really have no one to connect with who truly understands what its like. my friends are all supportive but they don't really know how agonizing it can be...
    meisedv meisedv 18-21, F 1 Response Feb 14

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