To: nne & Suzanne

[Guest guest]

I am so sorry to hear about your mother. As for expressing your anger, I

would be surprise if you were not very upset. CJD is a dreadful disease, it

took away my husband at age 47. When we were talking to the doctors we were

told that there was only 4 families in the USA that has the Familial form of

CJD, of course I know know that that was bull. My awareness of the vastness

of this disease has been enlightened through CJD-Voice, I now know that I am

not alone.

I live in Woonsocket, RI and work in lin, MA. Recently, through

CDJ-Voice I have slowly started seeing more and more posting from the New

England area. It would be something to see how many of us there are.

Jackie Laplante

ext.309

Re: NEWS

From: CPUB90@...

My mother was just diagnosed with CJD. We are from Taunton Massachusetts. We

are bringing her home from Mass General Hospital located in Boston, Mass.,

to

die. This is just blowing our minds apart! When we met with her team of

Doctors, I sensed a pattern of denial! Everyone had a different number of

people that they have had as patients at this hospital. Some of the doctors,

at different times, said it was very rare, only a few, while the nursing

staff

told my sister and I that they see many cases.I have contacted the Mass.

Infectious Disease Control office, and have an appointment with the head of

their department 9 A.M. tomorrow morning. SOMETHING JUST DOSEN'T JIVE!!!

We

have no way of finding if there have been any cases are in the Taunton area

(

and as I believe, many other poor souls sitting in phyciatric wards,

getting

miss diagnosed). My mother was very quick. She became very confused on

November 1st, 98. SEE HOW FAST IT CAN BE! My dear mom is already on a

feeding

tube, and very sick. She cannot talk, and is already showing sign of lung

involvement. We are devastated at what is happening to our DEAR MOTHER, and

it

will be our mission, to find out! My sister and I have different views on

the

source of my mothers illness, but one thing hold true. ...we are both

learning

and talking to the public about this rare illness...THERE IS ABSOLUTLY NO

PUBLIC AWARENESS ABOUT THIS DREADFUL DISEASE! Sorry for my anger...but I am

mad and very hurt and scared that I am losing my best friend! Thank you

for

reading this..nne & Suzanne

------------------------------------------------------------------------

[Guest guest]

Just a short note to welcome you to the fold. We have all been where you

are going and are here to offer our support. Before I found CJDVoice, I

was sure that I was experiencing the most horrid nightmare ever. I

couldn't seem to wake up and there was no one who understood what I was

going through except my immediate family. But being able to communicate

with the rest of the CJD family has enabled me to see I AM NOT ALONE and

more importantly AM NOT CRAZY or paranoid. Never be afraid to express your

frustration to us, but also share the accomplishments you make. We need

you, too!

Shar