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Gilliam Berea Syndrome
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Gilliam Berea Syndrome

Please provide information on warning signs, treatment, and prognosis for this horrible disease.
7 Comments Post a Comment
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Avatar_m_tn
My girlfriend in the 80's had it at 25 and it started with tingling in the toes then went to back of her knees so we took her in to ER and met with an internal med doc and withing 3 or 4 hours she  was paralyzed from neck down. All she could move was her head and fore arms and hands alittle.
   they treat the symptoms only so if you can't feed yourself they feed you, if you can[t chew they feed you iv style if you can't breath they put you on an iron lung.  
She came out of it in 6 weeks and her pain was constant.  Like when your leg falls asleep and it starts to wake up..// this was her whole body waking up at once ...for days
the is ok today, and their maybe other drugs or something that may help today...not sure.
hope this was helpfull  
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Avatar_n_tn
I had gillum brea when I was twelve years old I am now 53.  For me it started out with severe headaches in the back of my head, I was tiried and felt rundown.  My mother noticed that my feet where dropping (the doctors called it foot drop, if I was sitting on the ground I was unable to stand with help.  One night I urined in bed with was something that I had not done since I was a small child.  My parents to me to a doctor who placed my in a Sacramento Hosiptal.  The doctors could not figure out what was going on and sent me a hospital in Sand Francisco.  I was in the hospital for four weeks returning home in a wheel chair.  Most people who have contract Gilliam Berea will not be left with any residual affects.....I was one of the unlucky ones, I was left with drop foot.  I can't move me feet up and down and I have very week knees.
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Avatar_f_tn
I had it when I was 9 till I was 11 I am now 13 years old. % am all cured now. When I started to realize something was when my mom would always say hurry up I could barely move. I started to get the worst headaches and I had no idea what to do I went to so many dr. And they had no idea what was wrong. Then I went to childrens in dallas and they did test and told me I had gillian berea syndrome. I was scared and he said if he hadn t caught it any sooner I would ev died. Even though they gave me shots every hour and the shots of food they gave me sucked I was trying to make. I had a wheel chair because I was paralized and I could only move my arms my face was also num and I couldn t move my mouth eyes or anything in my face so I had trouble doing anything but I would pray for god to heel me and I got heeled and he said I heeled fast so thank god and I hope that helps but if you think you have it go to childrens and fast I have heard of people dying because of this!
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Avatar_f_tn
my grandpa had it last christmas(december of 2009). he went in for back surgery and when he was in the icu he started to scream becuse he couldnt feel his legs then it went to his lungs. he stayed at the methodist hospital in houston texas for about 2 months. when he first started to come out of it he cried b/c it was christmas day and thts his bday. he thought we didnt go c him so he started crying. the doctor was so great b/c he informed us on everything. everybody at tht hospital were wonderful. now he has some problems with his back still and he has shocks tht go up his left leg evrytime he gets up or sits down. our family was very thankful for god helping him heal.
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Avatar_n_tn
Unfortunately, I contracted this deadly disease in 1996.  It started with tingling of the toes and fingers.  It spread up the limbs and I could not walk nor hold anything in my hands. I was told it had spread to my nervous, respiratory and muscular system.  I was treated for it about a week in the hospital here in Houston, Texas.  I was told I would never be bothered by this disease again in life.  You can only contract it once in a lifetime.  Well, I'm scheduled to see my physician in a week to check out the tingling I'm experiencing in my toes and fingers again.  I haven't had any problems until now.  I'll keep you posted.
Faye
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Avatar_f_tn
My boyfriend jst got diagnosed with this disease. He is in the denver hospital. At first no one would really help him cause they didn't know what he was talking about he went to the hospital 4 times before they finally decided to really look into it. It started with what he thought was a cold for about a week. Then went to tingling in his fingers n toes now is spreading up. I talked to him today and within 3 more days he can't move his legs. They have him on globulin or whatever it is called. I am praying it works we r both really scared and appreciate the ppl who have been through this so we don't feel so alone. I am sorry for anyone to get this horrible disease but I thank everyone who has posted something so I have an idea about what we r about to go through.
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Avatar_f_tn
mzfaye, my brother had it a few years back and he kept going back and forth to the hospital with headaces and flue like symtoms (symptoms) then one day he said that he could hardly stand, my other brother rushed him to the hospital and by they time they got there he had to be carried in and he was losing the use of his hands rapidly, they figured it out just before he had to be put on a breathing machine, and he was in the hospital and rehab for almost a year.  He still does not have full use of his legs.  It's sad because this brother loved to dance and play sports.  Now as far as never getting this disease, syndrome what ever they call it, that is so far from the truth and it's frightening that you were told that.  If you take a flu shot you are in grave danger of getting it again.  There are a few triggers that anyone with this disease should be aware of because I've had the flu shot, and that is a question that I was never asked "have you ever had Gilliam Berea".  People please do your research before trying any meds because my brother and all of you were blessed, because this syndrome has killed many.
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