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Please read the account of Jennifer , Who has been fighting CIDP
and is about to undergo a Stem cell transplant. She is the fist
patient in USA undergoing this procedure. Please join in praying for
a
successful transplant. Post transplant picture.
{For Recent
updates Jen's website:
www.caringbridge.org/il/jeno}
Hi, my name is Jennifer.
I am 33 years old, have never been sick
and in the last 2 1/2 years have been
slowly declining and debilitating from
CIDP. I was initially diagnosed with
GBS in 11/02. At that time I was placed
on IVIG which helped in reversing my
debilitating weakness but quickly lost
its effectiveness. I have been on
plasmapheresis since 1/03. For me this
has been the most effective treatment.
At first when I was on inconsistent
plasmapheresis series I would physically
decline rapidly needing assistance for
basic needs such as dressing, bathing,
eating and walking. I was wheelchair
bound a couple times. I went to MAYO
Clinic in the Summer of 2003 and was
placed on a chronic treatment planof
plasmapheresis 1-2X/week since that time
along with high dose immunosuppressant
drug therapy. I have required 7 central
lines as well as a permanent AV graft in
my left arm in order to have access for
the plasmapheresis. I have been
hospitalized numerous times for central
line infections and I have since
developed subclavian stenosis. I am
currently undergoing treatment for an
autogolous stem cell transplant at
Northwestern Hospital in Chicago,
Illinois. This is going to be a long
and difficult process but in the end the
hope is to put me in full remission or
cure me. I am the first person in the
United States to undergo this treatment
for CIDP and only the second in the
world. The parameters that I had to
meet to be a candidate for the
transplant were very strict. I would
like to tell my story and get the public
to know about CIDP as well as the
treatment that I am undergoing. I do
not want anyone else to go through what
me and my family have gone through with
insurance, finances, and the horrible
quality of life that I (we) have had
during the last 2 1/2 years.
Please contact me soon and hopefully I
can get back to you. I will be getting
very sick from chemo etc. etc. in the
next few weeks.
Sincerely,
Jennifer
Please read below for more information by Jennifer.
Another Note By Jennifer , on the
research information about stem cells ....
The article on the other patient that went through stem cell
transplant for CIDP was done in the Netherlands
approximately 2 years ago. As far as we have heard that
patient is in full remission yet today. Though I am the
first one in the U.S to undergo this transplant for CIDP
Northwestern has done 130 stem cell transplants for other
diseases such as lupus and M.S. The statistics from those
130 transplants are: 65% are in full remission after 7
years or less, 25% are not in remission but are doing much
better then they were prior to transplant and 10% are back
at the same point or worse after transplant.
I will keep in touch if you request that.
Sincerely,
Jennifer
Recent update March 7th 2005 |
