E-drug: Wilson's Disease
-------------------------------------------------------------------------
Dear E-Druggers:
I have posted messages several times. Despite the fact that my fellow
e-druggers seem to have the most concern, recently, for the Aids crisis in
South Africa, etc., I am still persisting in the attempt to improve
awareness about other life-threatening diseases. In that regard, following
is a copy/paste of an e-mail I received today. I urge all or some of you
to take notice that there are many more issues, to be considered, than the
more "popular" ones.
I sincerely thank all of you for taking your precious time to read this
post.
If any of you feel inspired to offer assistance, please contact me
directly, or through this Listserv.
Mary Graper
Director, Wilson's Disease Association, International
mltgraper@aol.com
For more information: www.wilsonsdisease.org
I am Vanessa's mother. Foremost is my sincerest gratitude for all the
effort you had done to facilitate her medicinal needs, the Cuprimine.
However, your e-mail came just a day late her death. She died March 27.
Though she had some supply of the medicine for about 3 months of her
prescribed consumption, the medical diagnosis came just too late for her to
recover from the illness. I know you could feel what I had felt when
Vanessa took her last breathe on my lap after suffering from WD for about 2
years. Yes, she showed sign of the disease in June 1999 but her first
doctor, a gastroenterologist, doesn't have a first hand knowledge of the
disease so she was not diagnosed earlier.
It was in September 2000 that she was diagnosed with WD but seems quite
late for her to fully recover from WD. First manifestation in June 1999 was
like that of a hepatitis when she turned yellow-eyed but tested negative.
Second in August 2000 which manifested as if she was mentally-ill. Third is
in September 2000 to a different gastroenterologist doctor who,
fortunately, had a WD patient and had tested Vanessa positive of the
disease. Cuprimine was given through so many sources and I thought she
would recover. But 1st week of March she had an umbilical hernia and the
surgeon said it would be a big gamble if they would operate her. Then 2nd
week of March she was again hospitalized for 9 days but after so many
laboratory tests for high fever they could not find anything specific to
check what's wrong. But the surgeon said she is an ideal candidate for
liver transplant. Unfortunately, there was no liver transplant successfully
done here in the Philippines.
Then, on March 27, we went again to her doctor as her fever had occurred
again.The doctor said she must be confined again. But I am only a
single-parent and an ordinary employee and really find it so expensive for
hospitalization. But I am willing to do so for my dear daughter. But
Vanessa decided for herself and told her doctor that she is prepared for
whatever circumstances would entail her refusal to be hospitalized.The next
day we talked the whole wee hour of the morning until 1:00PM as if nothing
of her death would happen. She was talking to me while she is bed but I
don't see anything unusual. Her voice didn't change. She said something
will happened that day and that I should be prepared. She wanted to rest
and said that she is only fighting with her WD because of me. She stressed
that I extend her gratitude to all who help her - of course, that includes
you. Thanks, Ms. Graper. Before she died she read your first letter to her
with enthusiasm. She was so optimistic that she would be able to help other
WD patient here through her communication with you. But God indeed has been
too kind to her....
She was an overcomer - she successfully overcomed the fear of death. Now, I
am left with 2 more kids. I am now checking them for possbility of WD. But
I am also left with the fight to make this WD be known here. But no one
seems to help me. Can you help me on this? The doctors seem too busy or
simply not interested to established an association for WD here in the
Philippines. But I really would like to be of help. Ms. Graper, thank you
so much for the concern. Vanessa is indeed an advocate lady and I don't
want her death to end up that useless.
--
Send mail for the `E-Drug' conference to `e-drug@usa.healthnet.org'.
Information and archive http://www.healthnet.org/programs/edrug.html
Mail administrative requests to `majordomo@usa.healthnet.org'.
For additional assistance, send mail to: `owner-e-drug@usa.healthnet.org'.