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From: TSS ()
Subject: vCJD girl parents want drug trials
Date: March 2, 2005 at 8:57 am PST

-------- Original Message --------
Subject: vCJD girl parents want drug trials
Date: Tue, 1 Mar 2005 08:21:10 -0600
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@LISTSERV.KALIV.UNI-KARLSRUHE.DE


##################### Bovine Spongiform Encephalopathy #####################

vCJD girl parents want drug trials

10:24am 1st March 2005 The parents of a 19-year-old girl suffering from
the human version of mad cow disease have appealed for Government trials
of a controversial drug which they believe has slowed the deterioration
in her condition.

A High Court ruling was required to permit Holly Mills to receive
pentosan polysulphate (PPS), which is pumped directly into her brain to
alleviate the effect of new variant CJD.

Although it is not a cure, supporters of the drug believe it can
lengthen vCJD sufferers' lives, as well as improving their quality of life.


The first patient to receive PPS is still alive after two years and is
understood to be the longest-surviving vCJD sufferer.

But trials currently being carried out into potential treatments for
vCJD by the Medical Research Council (MRC) do not include PPS.

Holly's father Peter told BBC Radio 4's Today programme: "We want to see
more research done. We are not against any other therapies, we just
believe this therapy should be included."

Holly's parents were previously prevented by a court order from
discussing her condition in public, but a successful application from
the BBC to have the injunction varied has now allowed them to explain
the benefits they believe PPS has brought her.

"She is not 100% now, but she still has a chance to smile on occasions,"
said Mr Mills. "She still has memories."

Unlike many other vCJD sufferers, 18 months after her diagnosis Holly
can still eat normally and be taken out of her home, although she does
need 24-hour care.

Her mother Linda added: "I hope it will stop any more progression (in
the disease). We could be grasping at straws, but if she stays as she
is, she will do for me."

http://www.dailymail.co.uk/pages/live/articles/health/thehealthnews.html?in_article_id=339650&in_page_id=1797

http://news.scotsman.com/latest.cfm?id=4193408

TSS

######### https://listserv.kaliv.uni-karlsruhe.de/warc/bse-l.html ##########






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