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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.

    Hey guys I'm Megan I'm 15 years old I'm currently battling 2 disease lymes and POTS other known as postural othostatic tachycaridia syndrome. Also known as fatigue that's a whole...
    Megan2020 Megan2020 13-15, F 1 Response Jun 23

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    I remember the day it happened. I was arm wrestling and my wrist popped. It hurt pretty seriously but I just went on thinking it would go away. I was probably 17 at the time. I...
    Phillips299 Phillips299 26-30, M Jun 29

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    I went to the doctors today to check up on my lymes. Last Time I was in there they re tested me to make sure I had it we got the results today and it came back negative. But Iv...
    Megan2020 Megan2020 13-15, F 1 Response Jun 26

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    I was just diagnosed with Hashimotos this last week. My dentist told me to go get my thyroid checked. It turns out I have hashimotos. They had me do a sonogram and they also found...
    Kylee94 Kylee94 18-21, F 1 Response Jul 14

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    Anyone else hashimotos symptomatic but normal thyroid levels? If so what symptoms? I have brain fog, confusion, memory issues, tingling head, some sleeping issues, what seems like...
    CoachDanny CoachDanny 41-45, M a week ago

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    It took me 34 years to figure it out, but thankfully I have an answer to my health problems. I've suffered for years from numerous ailments, went through numerous medical...
    LostMittens LostMittens 31-35, F 1 Response a week ago

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    I'm 51 female with breast cancer history. Sixteen years ago I had a lumpectomy chemo and radiation. I developed lymphedema in my left arm afterward. About a year ago a doctor...
    damsel50 damsel50 51-55, F Jun 30

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    God I wish I had a friend. I feel like I need someone to tell me that I am okay, that things will get better if I try. I guess I don't believe in myself anymore... sometimes I...
    crazyhobo crazyhobo 26-30 1 Response Jul 8

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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 3 hrs ago

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    I have CIDP- I am 21. I was diagnosed last year after being wrongly diagnosed for two years. My main problem is severe pain- it started with pinching feelings in my toes and slowly...
    dobermanlady93 dobermanlady93 18-21, F Jun 25

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    I have CIDP- I am 21. I was diagnosed last year after being wrongly diagnosed for two years. My main problem is severe pain- it started with pinching feelings in my toes and slowly...
    dobermanlady93 dobermanlady93 18-21, F Jun 25

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    I'm 20 years old and have been suffering with HS for about 4 years now. Looking at me I don't think anyone would ever guess that I struggle with this and only a handful of people...
    AlexandraSavannah AlexandraSavannah 18-21, F 3 Responses Jun 28

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    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

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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 1 Response 1 day ago

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    My dad left before I was born. After I was born my mom was diagnosed with Huntington's Disease...it's a genetic disease. I was only 10. In those 10 years I watched her slowly die...
    blackbird08 blackbird08 18-21, F Jun 27

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    This website it is an incubator and all of its participants are spreading their disease like a plague. I will be fine I will be confident I will be happy and I will feel like I...
    darchuletagirl2 darchuletagirl2 16-17, F Jun 27

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    This website it is an incubator and all of its participants are spreading their disease like a plague. I will be fine I will be confident I will be happy and I will feel like I...
    darchuletagirl2 darchuletagirl2 16-17, F Jun 27

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    23+ years ago I was diagnosed with MS, even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match...
    bonsaigirl bonsaigirl 56-60, F Jun 29

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    After many years for a diagnosis I finally was diagnosed with Mixed Connective Tissue Disease. I am happy to have a diagnosis and am taking my medicine, Plaquenal. I understand...
    Oceanoftears Oceanoftears 41-45, F 4 days ago

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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 2 days ago

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    Well I find out tommarow at what stage my disease😁doctor said stage 2 but after seeing other xrays I believe it's stage 3 nervous about surgery and want them to skip the four...
    jeffbelcher jeffbelcher 41-45, M Jun 30

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    Over a year ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me...
    heyycutie16 heyycutie16 18-21, F 2 Responses Jul 13

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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 2 days ago

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    It's very difficult having a condition where you look fine on the outside but feel bad. People look at you and think " well she looks fine, what's her problem?" MS is definitely...
    andimann andimann 41-45, F Jul 1

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    This lady used to run a cam when her breasts were of a more manageable size. They appear to have never stopped growing. This must be the very scary side of the disease. Im...
    JohnAmenReveres JohnAmenReveres 51-55, M 2 Responses Jul 2

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    I have had HS since I was in ninth grade and it had grown worse over the years. I had a boil on my right arm pit that I had to have surgery on in 2007 when I was in 11th grade so...
    texasgirl2012 texasgirl2012 22-25, F 4 Responses Jul 5

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    I had a sudden urge to post my experience of MS with anyone who would read. I have only been on this journey since January, but boy has it been a long one. I am only 20 years old...
    youngwildfreedom youngwildfreedom 18-21, F 3 Responses Jul 6

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    I was diagnosed with Hidradenitis Suppurativa in January 2013. My first flare-up was under my right armpit. I went to the dermatologist thinking it was a boil that could simply...
    Amyhealing Amyhealing 31-35, F Jul 10

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    I was diagnosed May 2014 after seeing my GP for hip and lower back pain. She referred me to an orthopedic doctor for further review who did an MRI of my back after determining I...
    Deelue Deelue 46-50, F Jul 12

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    I have stage 4 chronic kidney disease since last nov. Of 2013,right before Thanksgiving. And I do have couple donors to help me but I guess the hospital is still gonna take awhile...
    letsbestrong letsbestrong 31-35, F 3 days ago

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    I have pulled strength from this site from a long time now, just reading peoples stories about hs and knowing that I'm not alone. My outbreaks have decreased a lot. I started when...
    AshamedAngel AshamedAngel 22-25, F 1 Response 3 days ago

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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 1 Response 3 days ago

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    My son who is 15 has been diagnosed with kienbochs disease - they have put ha wrist in a cars and are hoping that the blod flow to the bones will return normally - we are in New...
    raegem raegem 46-50, F 3 days ago

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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 2 days ago

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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 1 day ago

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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 18-21, F 3 Responses 1 day ago

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    I had absolutely no symptoms of narcolepsy until I was pregnant in 2010. My doctor gave me a flu shot and weeks later, BOOM...narcolepsy and cataplexy. I read that a flu strain in...
    missmonmon missmonmon 41-45, F 1 Response Jun 23

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    I am a 26 year old woman with a 3, 4 & 5 year old. My husband is an addict and currently in rehab about to be done the end of the month. We have been together for six years next...
    peanutscrazy48 peanutscrazy48 26-30, F Jun 25

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    21 yrs of screaming the place down with pain, unbelievable fatigue, no diagnosis for 10 yrs, there was no internet back then. When I finally got diagnosed with fms I was put on...
    tubbypurple tubbypurple 51-55, F 2 Responses Jun 26

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    My son was recently diagnosed with this disease and its been pretty scary understanding what are the best options for him. I have to say that reading these stories and talking to...
    rubybk rubybk 26-30, F Jun 26

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    Remember when EP first started and it was about MS? Then, they decided to spread the love and make it about experiences... about anything. It's a wonderful idea, but there are...
    DarkwingGoslyn DarkwingGoslyn 31-35 1 Response Jun 27

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    I am 32 I was diagnosed with seizure disorder at 24. I went 3 years seizure free until last Tuesday.. I don't know what or why it happened? I take my meds like I'm supposed to. I...
    Beanbella Beanbella 31-35, F 2 Responses Jun 27

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    Poison ivy , poison sac , poison sumac! I have all three in my yard and One of them I came in contact with , possibly all three, :( And of coarse I have it on my face and neck...
    Toru13 Toru13 41-45, F Jun 29

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    So I do not have Lupus, but I was wondering if anyone could give me a little bit of feedback. I went to a neurologist a few years ago for muscle twitching everywhere. He...
    Anxiousgirl13 Anxiousgirl13 18-21 1 Response Jun 30

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    What I hate most are the people who don't even have the disorder/illness/disease whatever you want to call it and they try to take over and tell you what to do. Like no, back up...
    usmcdaughter usmcdaughter 18-21, F 4 Responses Jul 1

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    I have had two dreams thus far involving a corpulent queen and the realm she is in. I will start with the first, as it made the second much more alarming to me. I constantly have...
    ZachariasM ZachariasM 22-25, M 1 Response Jul 1

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    Won't ever forgot the diagnose... Blew me into submission. The worst part the meds can't prevent the seizures...and that as well the meds havee effects which are screwing me up...
    ThevoiceofOutcasts ThevoiceofOutcasts 18-21 2 Responses Jul 1