Re: number of cases

[Guest guest]

Jackie,

Your messages are always enlightening. I don't know exactly the year of

your husband's death, but when I hear ridiculous statements from these

doctors about so few familial cases, a bunch of bull for sure. In my own

family I lost a brother to CJD in 1997 at age 54, and never ever thought I

would hear of the disease again, and then lost my beautiful sister at age

61 to the same disease in 1998, these doctors don't know what they are

talking about. It is a horrible, horrible disease and we don't know if we

will ever recover from the horrors we have been through,I am so thankful

for the Voice. At least I know we know we are not alone, we've all been

there and unfortunately to be there more than once is more than any of us

can comprehend. But I thank God we have each other and we will all make a

difference someday.

Frances

>

> To: cjdvoice (AT) onelist (DOT) com'

> Subject: To: nne & Suzanne

> Date: Wednesday, December 02, 1998 5:35 AM

>

>

>

> 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

>

> ------------------------------------------------------------------------

>