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 am having severe symptoms. I have reactive hypoglycemia, low blood pressure with fluctuations to high blood pressure. I have hyperpigmentation. My biggest and worst symptoms...
    snow4fun snow4fun
    41-45, F
    Apr 20
    I suffer through depression every day and people say stuff about it all the time not knowing that its a disease. It is and i have been left by people that i loved and many people...
    Rawr2132 Rawr2132
    13-15, F
    Apr 18
    I am 19 now, almost 20... I haven't been on here for a few years, but I think I'll give it a go. My parents and I thought I had Chronic Fatigue Syndrome for 4 years before...
    Invisibleninja12 Invisibleninja12
    18-21, F
    Apr 17
    Hello, I am a 34 year old female who just found out 2 weeks ago that I have a moderate PE. About 7 weeks ago I experienced a crushing pain in my chest and thought it was a heart...
    zitorobin zitorobin
    31-35, F
    Apr 12
    Folks, I've been suffering from this disorder since I was a teenager. I'm 46 now. I'm currently in remission. Here's my regimen: no nightshades, animal products, chocolate...
    jenn25601 jenn25601
    46-50, F
    1 Response Apr 11
    In 2015 I was diagnosed with Cushing's disease which was caused by a brain tumor. I had brain surgery on 20 July 2015. My best friend took leave the day of surgery and visited...
    Sanetvh Sanetvh
    41-45, F
    Apr 11
    My health hasn't been great since 2012. I had a few surgeries. Nothing serious. Last year I was diagnosed with a benign brain tumor that causes Cushings disease. I had brain...
    Sanetvh Sanetvh
    41-45, F
    Apr 11
    I suppose this is where I can speak freely, not revealing my identity. Honestly, writing about my life, a stupid, sob story, I feel skeptical about it. Not knowing if anyone cares...
    Aselfconsciousturtle Aselfconsciousturtle
    13-15, F
    Apr 10
    This is my story. It is long, but I hope you all can relate to it. A year ago I went on a catholic retreat called Kairos and I gave a speech on my ideals and how to find them and...
    cmom96 cmom96
    18-21, F
    Apr 9
    Hi everyone I wrote this post in 2014 and have included further information below about the development since. I’ve tried to summaries as best I could. I was diagnosed in June 2...
    mark01981 mark01981
    31-35
    1 Response Apr 8
    I've been recently diagnosed with Hashimoto's Disease and I'm two weeks post-op of having a partial thyroidectomy. I'm in hell. I have a hippie mother who doesn't fully understand...
    sicklylipstick sicklylipstick
    18-21, F
    1 Response Apr 7
    i hate that i can't communicate effectively. i know that my husband gets frustrated to the point of disgust. i just assume not talk to anyone. i have chronic pain and fatigue to...
    LITVET LITVET
    41-45, F
    1 Response Apr 5
    I have had temporal arteritis since 2009. I have been on steroids for over 6 years now and am wondering if any of you have had this disease as long as I have had it. I caught a...
    deleted deleted
    26-30
    Apr 4
    People say that there is something about cigarette that is so addictive and it relieves stress and ****. But hey it's not that cigarette that makes you relief. It's you. Everything...
    rajbconnor rajbconnor
    18-21, M
    1 Response Apr 1
    So in order to know your penis size do you have to measure it or is there like a system? Like bras?
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    This never fails! I am always happily shocked by the generosity of people when it comes to donating to a charitable cause! I am participating in my local APDA Optimism Walk for...
    LifeinWoodinville LifeinWoodinville
    41-45, M
    Mar 30
    ...And I don't know what to do about it. I don't know how to get better, and I don't know how to talk to my friends, family, or doctor about it. I feel like they just won't get it...
    onemoreusername onemoreusername
    18-21, F
    Mar 30
    I was diagnosed with this several years ago, and am fortunate (so far) that it only shows up periodically. A backscratcher works fine, or a bristly brush. My dermatologist...
    emmi331 emmi331
    46-50, F
    Mar 30
    0.0 I want to thank ep tbh . if it wasn't for ep I wouldn't have met so many amazing people . EP actually helped me a lot believe it or not , I still complain a lot but after ep I...
    LovelyGorillla LovelyGorillla
    16-17, F
    Mar 30
    Some of you may have read my previous posts about my greyound, Buddy, who came into my life and brought light and laughter Sadly he had to be euthanised last summer and so Bo came...
    Riffster Riffster
    51-55, M
    Mar 30
    I have a few websites I have created over the years. My most recent one, which is still being developed is a site that is to be similar to experience project, yet not closing, and...
    dcDiana dcDiana
    22-25, F
    12 Responses Mar 30
    me and him are soo different. first of all I am 15 and he is 13, we share a bunkbed and rarely fight but its like, we are soooo different. He likes to show off his body, I don't...
    michiganlad michiganlad
    13-15, M
    Mar 30
    Although I had always written, I adde no men I still get Enquiry Therefore, I have now made a decision, because I'm extremely annoyed. I'm going to block every guy. I hope that it...
    MistressNavel24 MistressNavel24
    22-25, F
    Mar 30
    I have 6 sisters and 1 brother. Most of us are adopted
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    I have like four nieces. But one, her names carleigh, I think she's autistic. It's ok though. She's So cute
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    I don't have friends to talk. I don't have a best friend to tell her about how I feel. How alone I am. There is no one.
    Lucifer63 Lucifer63
    16-17, M
    Mar 30
    My father. Unfortunately. Not proud to say that he is now estranged to me. I can see now that my family's life has been impacted, spoiled and to some extent ruined by him over many...
    TValentine TValentine
    56-60, M
    1 Response Mar 30
    The Dr recently put me on Haloperidol for long term chronic insomnia. The side effects seem really scary. This drug is to treat Schizophrenia & Bipolar. I do not have either of...
    Lornyjane Lornyjane
    41-45
    1 Response Mar 30
    I suffer from PTSD and am currently owner training a service Dog to help me with it. while its a help to thouse who have served us the programs who help people with dogs will only...
    Lokisvixen Lokisvixen
    18-21, F
    1 Response Mar 30
    16 Little Things You Can Do For Someone With AnxietySaw this article on Buzzfeed yesterday and thought it could come in handy for those who know somebody that lives with anxiety...
    iSpyce iSpyce
    31-35
    Mar 30
    I had pick some names for my future kids that I want to have 2 boys and 1 girl or 1 boy and 1 girl when I get older if me and Michael are still together
    michaelXelizabeth michaelXelizabeth
    13-15, F
    1 Response Mar 30
    When I was still in school my class had a trip to the beach for a few days. On the first day I told my friends that I am a nudist and would love to be naked on the beach. I trusted...
    youngNudist21 youngNudist21
    18-21, M
    2 Responses Mar 30
    I feel utterly crushed. I put my feelings back out there again, allowed you to convince me to give it a go to have you just go. I'm thrown away as easy as rubbish in your pocket...
    deleted deleted
    26-30
    2 Responses Mar 30
    World peace is not the main thing I should ask for - I would want to ask the world of humans to change for the greater in good where it is necessary - people changing is the root...
    Stephenrko Stephenrko
    36-40, M
    Mar 30
    My dad is a nice man, but he has problems. My parents became officially divorced in 2012 (my mother couldn't handle dad's angry outbursts), so I rarely see him. But when I visit...
    theabsurdistunicorn theabsurdistunicorn
    16-17, F
    2 Responses Mar 30
    My father in law, (please see my poem to him 'The Bitter Sea' if you have a moment), my mother in law, (again, though shared with own own mother on her death 'Task No More'). And...
    TValentine TValentine
    56-60, M
    Mar 30
    I'm a 19 year old Male and I was diagnosed with wpw when I was 15 years old for 4 years I have basically ignored my symptoms but in recent years it has become increasingly...
    faiquzaki faiquzaki
    18-21, M
    Mar 30
    I sing, I play the guitar; with children is especially good fun and I am pretty good at it, even if I say so myself. I have even had 100+ veteran rugby players sat crossed legs on...
    TValentine TValentine
    56-60, M
    1 Response Mar 30
    Falling in love with someone only to find out that your race is a hurdle that's just too big for that person to overcome is something that I wish on no one. Today is my ex...
    mikeeshoe mikeeshoe
    36-40, M
    3 Responses Mar 30
    I have been depressed for as long as I can remember, but didn't realise what u beat feeling was actually major depression. I thought it was just my personality. In January, I was...
    Itsallahoax Itsallahoax
    22-25, F
    3 Responses Mar 30
    I have tripophobia. Fear of small cluster of holes.
    VeexVee VeexVee
    22-25, F
    2 Responses Mar 30
    EP is amazing, truly amazing. There are some people out there who's only driver is to listen out for those who are grappling with something, and often as not, being anonymous, it...
    TValentine TValentine
    56-60, M
    Mar 30
    Encouraged by my boss I began my career as blood donor when I was 22 and continued to with only a few breaks because of medication regularly donate blood every three months until I...
    KarinAal KarinAal
    61-65, F
    Mar 30
    Some say I have a dark side. But that's just me after the tanning bed.
    gtownguy gtownguy
    51-55, M
    Mar 30
    I write, have a great job that allows me to work from home, walk the dog, workout at the gym, travel, have cool friends. But when I get pissed I take hostages.
    gtownguy gtownguy
    51-55, M
    Mar 30
    This gets kinda old and tiring.. everyone looks to you to fix things...expected to make everything OK. especially family! I am the mediator, the bounce your day off of, and fighter...
    angelpumpkin36 angelpumpkin36
    36-40, F
    Mar 30
    what a days... three days ago,i met one of my friends who is talkative,we work together,i've been listening her always,but that day,i've been hard day lately,do you have little...
    genjiipiexx genjiipiexx
    31-35, F
    2 Responses Mar 30
    I had/have a Bestfriend but I only really call her that because we've known eachother since we were 3 yrs old & we're both 17 now.. Anyways we don't really ever hang out or even...
    ConfusedLittleTeenagedGirl ConfusedLittleTeenagedGirl
    16-17, F
    1 Response Mar 30
    Hey, have you ever read the news? http://www.vice.com/read/looking-for-love-on-wooplus-an-app-for-plus-sized-dating There is a dating app for BBWs and curve lovers!! EP gonna...
    hongdi hongdi
    26-30, F
    Mar 30
    Hey,how are you? Have you ever read the news? http://www.vice.com/read/looking-for-love-on-wooplus-an-app-for-plus-sized-dating There is a dating app for BBWs and curve lovers...
    hongdi hongdi
    26-30, F
    Mar 30
    when I have good days, I think it's all over, then something triggers it, maybe a noisy neighbour, and the blackness returns and I'm so sad that all these years I've tried to work...
    TLMills TLMills
    36-40, F
    1 Response Mar 30
    Hey,how are you? Have you ever read the news? http://www.vice.com/read/looking-for-love-on-wooplus-an-app-for-plus-sized-dating There is a dating app for BBWs and curve lovers...
    hongdi hongdi
    26-30, F
    Mar 30
    i will be glad when this election is over so i wont have to see it again.
    xkmb xkmb
    56-60
    Mar 30
    my friend is a 7 yr old with whom i go for running races. i am 15 yr old indian boy i smile at him and wave my eyebrows at him. he is really a great friend. i am lucky to have such...
    linkinparkiridescent linkinparkiridescent
    13-15, M
    1 Response Mar 30
    Right now I have crushes on most of the movie! Avengers. That Captain and Sargent duo are at the top of my list with Black Widow ??
    Aeryn90 Aeryn90
    26-30, F
    1 Response Mar 30
    When my wife told she has infertility of tubal blockage, my all time dream and desire of being a dad suffered a major blow. Since we did not want to give up we set up some money so...
    Kiasman Kiasman
    26-30, M
    2 Responses Mar 30
    I have Borderline Personality Disorder.
    dontcrossmyborderline dontcrossmyborderline
    16-17, F
    2 Responses Mar 30
    Now that EP is closing, this is my final account on here. I've been on and off for 3 good years. I just wanna let this out. I stalked someone I found intelligent, interesting...
    deleted deleted
    26-30
    6 Responses Mar 30
    I'm in 8th grade and I have been pulling my eyebrows and eyelashes since 5th grade and they are completely gone because of bullying and that I have not one friend... I have...
    Penguinlover02 Penguinlover02
    13-15, F
    1 Response Mar 30
    It's funny. I'm usually pretty busy and everybody is blowing my phone up wanting to talk but I can't. Then when I have time and am able to talk nobody can. Hmm.
    Env06 Env06
    26-30, F
    1 Response Mar 30
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