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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, T Mar 1

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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 46-50, M Mar 1

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    Hello, I was born with celiac disease and was recently diagnosed within about 5 months ago and I just turned 16. I've been very sick my whole life with stomach pain, occasional...
    WolfAssassin16 WolfAssassin16 18-21, F Mar 18

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    I have Keratoconus.... That's one reason why my eyes are green also why my eyes are big.
    ANNI3PI3 ANNI3PI3 16-17, F 1 Response 3 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 3 Responses Mar 2

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    It has almost been two years since I have been diagnosed with myasthenia I have learn so much about it and from it. It is one frustrating disease. I try not to let it bother me it...
    lljones417 lljones417 18-21, F Mar 12

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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 2 Responses Mar 1

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    So I've been living with genital herpes for about a year now. Nothing much has changed. I haven't been happy since I got this, it hasn't gotten better, I still don't know who I got...
    ydnacybab ydnacybab 22-25, F 6 Responses 6 days ago

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    Please help if you can i know you all are struggling aswell (https://www.youcaring.com/medical-fundraiser/help-rachel-with-debt-from-late-stage-lyme-disease/328355#.VRUAZkKYLak...
    rabradley rabradley 22-25, F 12 hrs ago

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    March 21, 2015 The dream I had last night was far too accurate a metaphor for my life than I'm comfortable dealing with. It was long and drawn out, with many different twists and...
    ncbarr ncbarr 31-35, F 5 days ago

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    I was diagnosed with a disease called trichotillomania which is a disease that makes you pull out your hair strand by strand. I've been doing this for almost 3 years now and a lot...
    WinglessSoul WinglessSoul 13-15, F 1 Response 2 days ago

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    Today started with a visit from the neurologist. He asked how I was feeling and what I was able to accomplish. He had obviously already read what the nurses wrote though, since...
    ncbarr ncbarr 31-35, F 1 Response Mar 5

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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 Feb 28

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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 Mar 1

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    It's hard to get used to having to choose between all the little things you do in a day that you take for granted. This morning I walked to the shower (behind the wheelchair) and...
    ncbarr ncbarr 31-35, F Mar 8

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    March 9, 2015 The next person that tells me to be positive is going to get punched in the throat. Don't tell me how to deal with this if you've never been through it. I'm being...
    ncbarr ncbarr 31-35, F Mar 11

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    Okay so, a few things I want to talk about. I have made peace with this disease more quickly than most people. I was diagnosed with genital hsv1 on February 6, 2015. I truly felt...
    lil0miss0sunshine lil0miss0sunshine 22-25, F 4 Responses a week ago

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    I was diagnosed with Crohn's when I was 10 (In 2001), and now I'm 23. (I'll be 24 in June) It's weird knowing you've had disease for over half your life and will continue to have...
    Catherdra Catherdra 22-25, F 4 days ago

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    I was diagnosed with this disease 2 years ago at the age of 64. I am very angry about this. I don't know what could have caused this; it came out of nowhere. I recently moved into...
    PP711 PP711 66-70 Mar 3

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    I'm 22, I was diagnosed when I was 12. When my doctors told me I would go blind, I was sad, but I was naive. Being only 12, when my doctors said 'probably not until you're 80', it...
    szmb szmb 22-25, F Mar 7

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    I've never known anyone who's more stronger than my mother, even when times are tough she may shed a tear but still stay strong with such a horrible disease. Although it has its...
    Fantasygamergirl Fantasygamergirl 16-17, F Mar 13

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    I got diagnosed in 2012 when I lost all feeling in my legs. They did not catch it in time for it to be cured, they tried but failed. I was luckily already seeing a doctor who also...
    briannanicolex briannanicolex 18-21, F 1 Response Mar 13

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    March 16, 2015 Today was my fourth day home. I had told myself and my family that I wanted three days to sleep and relax and just recover, and then I'd start working on getting...
    ncbarr ncbarr 31-35, F Mar 16

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    My story is not about the horrible effects of this disease on my body, my mind, my life. It is not about having to isolate myself from friends, my children, grandchildren, my...
    neckoflace neckoflace 70+, F 1 Response Mar 17

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    Hello everyone, I am 37years old and sick. I've been diagnosed congestive heart failure, and diabetes. My life right now is about meds and side effects. every day is different and...
    tman3737 tman3737 36-40, M 1 Response 3 days ago

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    So I wrote on here about a little over a month ago. I have suffered through depersonalization since I was 18. I took this disorder as something I would never be able to overcome...
    katejen2 katejen2 22-25, F 1 day ago

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    This is something that I have been considering for some time now. Before I go into my story, I will tell you a bit about me. I am a divorced, mother of three beautiful children...
    youchampion youchampion 36-40, F 21 hrs ago

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    Chrohn's is the worst!! These have been the roughest 2 years of my life so far. Words can not explain my frustration with this. All I want to know is what the hell can I eat...
    beYOUtifulxo beYOUtifulxo 26-30, F 5 Responses Feb 27

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    My story is a long one. I was diagnosed with Achalasia in 1990 at 6 years old. Long before all of the keyhole entry surgeries were created. It took 8 months and dozens of trips to...
    livingtestimony83 livingtestimony83 31-35, F 2 Responses Feb 27

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    I know this is long. I want to know if anyone else feels the guilt that I feel and depression or if anyone has similar experiences. Thank you so much for your support. I feel...
    interested0001 interested0001 31-35, F 1 Response Feb 27

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    I never had much of a childhood. My dad struggled with heart disease and this impacted our family every day. He passed on when I was a teen and my mom provided for us, but there...
    CarrieSue CarrieSue 51-55, F Feb 28

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    So I have been suffering for several years and just had a really really horrible time losing hope and thinking about death and stuff.My family keep put pressure on me..they don't...
    diyaandalbert diyaandalbert 18-21, M 3 Responses Mar 1

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    People who don't pick up their dog waste are deplorable sub human scum. Not only it is lazy but it also spread diseases, The worst offenders commit this act around areas that have...
    knight42 knight42 41-45, M 3 Responses Mar 1

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    Hi, Im a 17 year old girl from Sweden. I go too high school (I think that's high school in your country). Since I'm from Sweden my English might be a little off, but i hope it's...
    AnnaMariaC AnnaMariaC 16-17, F Mar 3

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    I was diagnosed with stage 3 Endometriosis when I was 15 years old, having my 3rd surgery at age now 22, soon. My boyfriend of 6 months recently broke up with me because of it...
    SarahPhoenix777 SarahPhoenix777 22-25, F Mar 6

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    Do my eyes droop? Yes and no. Lately I haven't like many pictures of myself because I didn't think I looked very alive. Every now and again when I had my concrete leg days I'd take...
    ncbarr ncbarr 31-35, F 1 Response Mar 7

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    My immunologist in searching for reasons I don't fight infections well has discovered that I have multiple myeloma. Well with support from my family friends, and my medical...
    oscarwiskers oscarwiskers 56-60, M 1 Response Mar 8

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    I have bruises and needle marks all over my body. Everyday for 24 days I've had an injection in my stomach of blood thinners, I've had numerous blood tests, sometimes twice a day...
    ncbarr ncbarr 31-35, F Mar 8

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    With all of the negatives of herpes can we name some positives? I know that sounds silly, but can you name one good thing that's come of this? I can! I'm eating healthier and...
    redheadchigirl redheadchigirl 26-30, F 5 Responses Mar 13

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    Diagnosed about 12 years ago around the age of 50. Don't seem to be as ill as some people here, but have the usual symptoms of weakness, inability to climb stairs, great difficulty...
    MikeB3114 MikeB3114 61-65, M Mar 13

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    okay so I was with this guy for 3 years ; he was always cheating on me but he was cheating on me for the last year with the same girl. and then he cheated on her with a different...
    xoxokatesue xoxokatesue 18-21, F 1 Response Mar 13

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