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  • Personal Story: Rheumatic Fever and glomerulnephritis

    Posted in: Rare Disases August 29, 2014 04:56 PM

    I am concerned my daughter had rheumatic fever two years ago and is not receiving prophylaxis. She is in first grade and I am always on edge. She had strep throat November that year and received antibiotic treatment. She did well for a month or so but then developed respiratory symptoms, palor,...

  • GTP Cyclohrdrolase Deficiency - help

    Anonymous 0 Replies
    Posted in: Rare Disases August 25, 2014 01:37 PM

    I am a 19 year old Chinese boy that is currently diagnosed and suffering from GTP Cyclohrdrolase Deficiency. Growing up I was a very active boy, participating in various competitions in school and never once suspected that I would have that wretched disease. Symptoms first started when I was 14,...

  • My teen daughter diagnosed with purpura. Now her skin is itchy all day, prone to insect bites

    Anonymous 0 Replies
    Posted in: Rare Disases August 15, 2014 08:19 PM

    Daughter is constantly itching all day. Hand gets swollen, joints hurt. Has an appointment to see allergist/ immunologist. Any help?

  • My Daughter is 16 years old and has been vomiting everything she eats for the last 7 months

    Anonymous 2 Replies
    Posted in: Rare Disases July 28, 2014 10:33 PM

    Hi my Daughter has been vomiting everything she eats for the last 7 months she has had every test that doctors can think of , she has been in and out of hospital she gets dehydrated and ends up back in hospital, We have simply tried everything she has missed so much school . When she...

  • Right toe pain bone decrease and when i did xray high uric acid doctor said to do surgery what i do

    Anonymous 1 Replies
    Posted in: Rare Disases July 15, 2014 07:57 PM

    Hello i need some suggestion about right toe pain and when i did xray it found that uric acide level is increased and the big toe bone size is decreasing or flux and doctor is saying we have to do surgery to figure out why the size of bone is decreasing can you tell me its gout or should i do...

  • I am in constant stomach and esophageal pain

    Anonymous 0 Replies
    Posted in: Rare Disases January 21, 2014 06:28 PM

    Since I was a child (I am now 71) I have regurgitated most meals. I am in constant stomach and esophageal discomfort. I hv an adjustable bed to help keep me at an angle high enough to reduce reflux, but I never seem to be able to fill my lungs. All my GPs have sent me for camera work and confirmed...

  • Does anyone have info on Fairbanks disease, it is a rare bone disorder .it results in short stature

    Anonymous 0 Replies
    Posted in: Rare Disases January 21, 2014 05:17 PM

    I have found very little info on this !thanks

  • 4 rare disorders happy to be alive but now what

    nkr3686 0 Replies
    Posted in: Rare Disases May 27, 2013 07:00 PM

    My husband was diagnossed almost 4 yrs ago with 4 rare disorder (2 which I can not pronounce) they cause his body to produce blood clots in his major organs..do not come up thru the legs like normal they just form in his organs. Has already had 7 hit his lungs and one hit his brain with a bleed to...

  • I can't stop losing weight

    Anonymous 0 Replies
    Posted in: Rare Disases May 25, 2013 09:06 PM

    I am a 48 year old female. About a year and a half ago i started losing weight. I would lose about 10 pounds then it would stabalize for a while. Then another 10 pounds or so. I have lost 60 pounds all together. I'm 5'4 and now weigh 110. I eat a lot. I have had many tests done and they...

  • Sore throat & scalp scabs

    Anonymous 0 Replies
    Posted in: Rare Disases May 6, 2013 08:55 PM

    When I was a kid, I had very bad sore throats that made me very ill. I was often on antibiotics and I was often very tired. I didn't like my school doctor at all (he frightened me) and I'd only ask to see him if I felt really bad. Whilst being checked out again by this school doctor (I was about...

  • 47xxx syndrome

    I. Abbasi 0 Replies
    Posted in: Rare Disases March 16, 2013 04:19 AM

    Sir,My 18-year-old daughter has been diagnosed as suffering from 47xxx syndrome. I request your kind self to help me by providing information on vocational and othertraining for people with such handicaps.Below is given her case history from Dept. of Endocrinology..., Christian Medical...

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  • Serratia - Blood Disease

    tgoodwater2002 0 Replies
    Posted in: Rare Disases December 18, 2012 03:35 AM

    If you have a pocket of this infection the size of an egg in your body and it busts.....how long would it be before you would die?Thank you for your time.

  • Serratia - Blood Disease

    tgoodwater2002 0 Replies
    Posted in: Rare Disases December 18, 2012 03:16 AM

    My step dad has just past away on sat. night. He had this Serratia disease. He was diagnosed in march of this year. He had a pick line in for anti-biotic. Come to find out the doctor had used the wrong anti-biotic. There was a pocket of this puss that hadn't gone down after the first...

  • Neuralgic Amyotrophy

    Anonymous 0 Replies
    Posted in: Rare Disases April 2, 2012 08:33 AM

    Hello everybody, I'm a male, 42 years old, in good physical health, perfect height/weight ratio, and I was diagnosed with Bilateral Brachial Plexus Neuralgic Amyotrophy. Case historical: On March 1, 2012, without any reason at that I could refer, I started having muscles pain at the upper areas of...

  • q fever

    plains123 0 Replies
    Posted in: Rare Disases February 26, 2012 01:21 AM

    I was diagnost with q fever,im on meds,seeing dr. The shock is to great,im scared. Im also told by the dr. that ive been expose to Tuberculosis. Here soon im suppose to go see a Cardio dr.My question is: do i pose a threat to my only one kid i got?My family? I have asked these question to the...

  • Spinocerebellar ataxia 14 - SCA14

    hellonoone 0 Replies
    Posted in: Rare Disases November 14, 2011 05:02 PM

    are there any treatment that seems to help? i hate going around and people are wondering if im drunk, and my pure cordination, im afraid i cant get the career i want :/ anything? i would love to give it a shot.when i was a child i was very active and never shy, now i hate going to store, im never...

  • Please Help!! Adrenal Problem?

    Anonymous 0 Replies
    Posted in: Rare Disases June 23, 2011 08:02 PM

    I recently had a 24hr urine collection done by an endo to measure my adrenal and thyroid function. When the results came back he told me I was fine. However upon talking to another doctor I know who isn't an endo but does specializes in hormone therapy, told me that I was practically in adrenal...

  • help please

    Anonymous 0 Replies
    Posted in: Rare Disases June 10, 2011 04:38 AM

    The whole back of my mouth is swollan the glands on each side and behind my ganglia it has been this way for five days now and when I close my mouth it feels like its all touching I dont have any patches or burning but it does hurt and seems to be getting worse...

  • Charcot marie tooth

    moonbubble 1 Replies
    Posted in: Rare Disases May 18, 2011 08:38 PM

    My daughter is 10 she has CMT type, My daughter comes from a family of CMT suffers who are significantly effected , 2 members of the family have suffered leg amputations she has significant muscle wastage , mobility difficulties , significant and rapid progression , ankle and foot problems...

  • Progeria

    presynaras 0 Replies
    Posted in: Rare Disases May 3, 2011 06:59 AM

    Hey guys, I came across the disorder called Progeria syndrome. So anybody have any info and personal experience of handling people with the syndrome, please put forward ur knowledge on the subject. This is a very rare disorder and people affected by it show early ageing, stunted growth, disable...


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