Hydrocephalus Support Group

Hi, you are not alone,it`s just that most people have never heard of hydro,let alone how you feel when you have to deal with it.I try to simplify when asked about it so they can understand !I wish you well,I had an ETV to treat mine & all is well at the moment,Lin UK

I also would like to chat with others, Mine is acquired idiopathic apparently there are over 50 types.

Griz

Jennifer,

I too know what it feels like to feel "different" and alone that is one reason I am glad this group is here...I have made a few friends on here and they have helped me feel more like normal for the condition I have..As far as what kind of hydro I have I have no idea....but I just know I live a close to normal life and that's all tha matters! :-)

you know growing up i had no one to talk to other than my parents., didnt know much about it but that i had a big head and others made fun of it. now that im older it doesnt bother me to look in the mirror because god made me this way for a reason. my youngest now four has it but told its only mild.

I agree its common in the U.s and im stuck in australia not being able to talk to any1 about my condition and im only 14 and ive been putting up with it all my life even at skool i used to get called horse head scar boy and more stuff like that because of all the "Shit" like that if any of use wanna chat bout just add me on msn wwe_rocks_11@hotmail.com thanks and plzz add me coz i would like to talk

jlucas, you can contact me or others in this group anytime you need to talk.

Codie23, I understand what you are going through, I have put up with the same stuff as you...the taunting, name calling, etc. You hang in there and best wishes to you.

my son is 7 and he just got his shunt 5 days ago and when he seen his head he started crying and said everyone will make fun of him. Can you guys tell me what you have done to over come this tanting of kids. As a mother I have no issues going to school and whooping a 1st grader for messing with my baby. We cannot cut his hair for 2 weeks and he cannot wear anything over it.

Children can be very cruel. I was teased myself in grade school, so I know how it feels. If I were you I'd ask your son's teacher if you can go into the classroom and speak to class about your son's condition and why he looks "funny" right now. It might help because the children will have a better understanding of it. I know it helped me to some extent when I explained to peers. Some were nicer than others and took a real interest in it, while others didn't care. But, I think it's worth a shot because like I said before children can be cruel and it's really not fair to anyone, regardless on the circumstances. Hydrocephalus has now become part of your son's life and his peers are just going to have to learn to accept him for it because it wont go away. As for covering it, I'd ask if he can wear bandanas, I wore them in college because I had my last set of revisions six weeks before I started, and you can tie them so they don't look girly. I needed the point of the triangle hanging down in the back, because I was missing so much hair but, it can be tucked.

Although, I have yet to meet someone face-to-face with Hydrocephalus, one thing I do is make people aware of Hydrocephalus that are not aware of the condition. Many in my life especially when at school had to know of my condition and what a shunt was, where it was, etc. Now because of my condition they know all about Hydrocephalus and have told others.

That is what I do with my Hydrocephalus, although others might not have it that I know of, at least I can educate others.

I have had hydro for all of my 41 yrs. I also deal with depression daily