--- In noonan_support@yahoogroups.com, "kevinbottorff"
<kevinbottorff@y...> wrote:
> I am a 30 year old male who has delt with NS firsthand. I have
some
> of the symptoms of NS such as webbed-neck(corrected with plastic
> surgery at 13), heart problems(2 heart surgeries at 10 and 28 years
> old),ADD, unpronounced chin, sunken-in chest and some hearing
loss.
> I have never seen anyone with a webbed-neck in my life and this was
> devastating to me as a child. I still sometimes deal with those
bad
> childhood memories and never had anyone to relate to what I was/am
> going through. I have taken all types of medication to balance my
> mental state, anti-depressants, anti-anxiety, and blood pressure
> medicine. I have gotten better and broke out of my shyness stage
> around 18. But sometimes I find myself still self-conscious about
> the scars on my neck and body from my surgeries. I would like to
> correspond with anyone interested with what I have been through.
>
> Sincerely,
> Kevin Bottorff


Hi my name is Alyson and I'm 41 years old.I was born with congenital
heart disease.I had pulmonary stenosis and atrial septal defect.I was
born with a big head and droppy eyes.My brother was born and died in
1964 of congenital pulmonary lymphangiectasia.Three weeks after he
died I went into congenital heart failure the doctors told my parents
I wouldn't live.In 1969 I was found to have a brain absecces and the
doctors gave me a 5% chance at life.The next year I had open heart
surgery.Through the years classmates as well as others have made fun
of me.I have had learning disabilites as well.Sometimes life isn't
easy but I guess you just manage to go on someway.I'm trying to get
the help I need.

Best wishes
Alyson Manasco