I have it too, but I don't think neurosurgeons find it to be sexy enough to focus on. They all want to be the big brain tumor people. Even though it sucks for us, there are less than 1% of the population of this country that are effected. I don't think that the medical industry finds that number to be attractive enough to warrant action
I've had hydrocephalus all my life and have had over 50 brain surgeries... yes it does get pretty hard some times but I've still been able to live a normal life.
Hi Kathleen. There is no "determined" cause for Hydrocephalus. My parents told me they noticed that at 2 1/2 to 3 months of age, I could not hold my head up and could not focus my eyes and that is when they knew something was wrong. My mother did not take drugs or even drink or smoke. I don't believe innoculations have anything to do with it. I think it is something developmental in the womb which may have a delay in surfacing in infancy. Otherwise, it is said to be caused by trauma
My grand daughter had cist that was blocking the fluid. Obviously it is blockage, right ? Folks need to speak out more. More than Breast Cancer. Why are'nt we doing AS MUCH for hydrocephalus as we do for breast cancer. Been very angry abt that for a long time !! Thank GOD I can finally sound off here. TKS
Anyone that wants to join me in conversing abt this, would be greatful
please dm me at Twitter ANYTIME @ believeanyway. Don't be afraid any longer to speak up.
I am 41 years old and have lived with Hydrocephalus all of my life. I have been fortunate to have had the same shunt for 30 years and have only in the last 8 years had additional surgery. People do need to understand the seriousness of this condition. It can cause strokes and seizures - both of which I have had. There MUST be more funding for research for a cure- not just the treatment.
can someone explain to me why we who have hydro do not have the ability to get medical care that can save our lives? at 60 grand every single time we go under you would think they would consider all the money they are wasting on not finding a cure. something tells me stem cells are the answer but the myth proceeds the fact.
Neat stuff. Too bad they don't have more consideration such as this in other places. I'm 40 now and have had hydrocephalus since I was born. I do wish people would stop pronouncing it "hydro-syphilis"
So... i must have missed it... but what has happened since? Was it approved?
SweetBrwnSuga 1 day ago
Someone ought to tell them how to pronounce it! It's Hy-dro-ceph-a-LUS.
MrsMelanieC 10 months ago
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I have it too, but I don't think neurosurgeons find it to be sexy enough to focus on. They all want to be the big brain tumor people. Even though it sucks for us, there are less than 1% of the population of this country that are effected. I don't think that the medical industry finds that number to be attractive enough to warrant action
zachariahs78 2 years ago
I've had hydrocephalus all my life and have had over 50 brain surgeries... yes it does get pretty hard some times but I've still been able to live a normal life.
Em1594 2 years ago
Hi Kathleen. There is no "determined" cause for Hydrocephalus. My parents told me they noticed that at 2 1/2 to 3 months of age, I could not hold my head up and could not focus my eyes and that is when they knew something was wrong. My mother did not take drugs or even drink or smoke. I don't believe innoculations have anything to do with it. I think it is something developmental in the womb which may have a delay in surfacing in infancy. Otherwise, it is said to be caused by trauma
cklmtn 2 years ago
My grand daughter had cist that was blocking the fluid. Obviously it is blockage, right ? Folks need to speak out more. More than Breast Cancer. Why are'nt we doing AS MUCH for hydrocephalus as we do for breast cancer. Been very angry abt that for a long time !! Thank GOD I can finally sound off here. TKS
Anyone that wants to join me in conversing abt this, would be greatful
please dm me at Twitter ANYTIME @ believeanyway. Don't be afraid any longer to speak up.
believeanyway 2 years ago
I am 41 years old and have lived with Hydrocephalus all of my life. I have been fortunate to have had the same shunt for 30 years and have only in the last 8 years had additional surgery. People do need to understand the seriousness of this condition. It can cause strokes and seizures - both of which I have had. There MUST be more funding for research for a cure- not just the treatment.
cklmtn 2 years ago
Would really like to communicate.
Say hello to Kathleen believeanyway@yahoo sometime.
Hoping to hear from you.
believeanyway 2 years ago
Have one with hydrocephalus and another with SMA 1.not biological.
Used to affect 1 in 10,000 they said. Here stated 1 in 500. Now 1 in 250.
Just exactly WHEN ARE WE GOING TO DO SOMETHING ABOUT THESE CHILDREN ??
Stop taking assistance away from these children and educate Doctors, Parents,and Specialists.
Most of all I am wondering what the cause is.. Is it from plastic, environment, shots??? PLEASE Research.
I AM VERY INTERESTED IN THESE TWO DISEASE'S.
believeanyway 2 years ago
im 14 and i have it.... they better fucking find a cure i hate being teased
Sabrinabeezle 3 years ago
I'm 45;sorry to hear you'er going through the same experience I did in school. Kids can be jerks;so can employers.
HUSKY57887 2 years ago
can someone explain to me why we who have hydro do not have the ability to get medical care that can save our lives? at 60 grand every single time we go under you would think they would consider all the money they are wasting on not finding a cure. something tells me stem cells are the answer but the myth proceeds the fact.
chickaboom73 3 years ago
Comment removed
zachariahs78 2 years ago
Neat stuff. Too bad they don't have more consideration such as this in other places. I'm 40 now and have had hydrocephalus since I was born. I do wish people would stop pronouncing it "hydro-syphilis"
UglySean 3 years ago
Yea, I hate it when they pronounce it like that, it makes me feel like I have some kind of Water based STD.
Teufel69 3 years ago