File        : PNHHistoricalewBJH2002.pdf
Description : PNH Historical Review

Hi all,

Just wanted to let you all no that Denise is doing all right. We both
have been very busy lately. She is still being transfused about every
4 - 6 weeks, but we haven't had any serious incidents since the budd
chari diganosis last April. Margaret thank you for your
thoughtfullness. She said she received a card from you, it means alot
to her that through a common tragedy, you have all grown to care
about people you have never met. We will try to update more often,
time just seems to get away from all of us. I hope everyone is
feeling ok.

Love,
A sister of a PNHer

Rickay

Last evening I had a nice chat with Sara at the website chat room. I think it would be a great idea if we could schedule a time that would be convenient to most people. It woule be a chance to get to know each other on a more personal level.

MILLIE
PNH since 1997. Meds Folic Acid,
Iron  Supplement,Fosamax.Transfusions
every 4 weeks. Meds for Restless Leg
Syndrome, Permax.

---

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There is 1 message in this issue.

Topics in this digest:

1. Fw: Message from Dr. Ware
From: "H. Huntley"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Fri, 21 May 2004 16:54:08 -0400
From: "H. Huntley"
Subject: Fw: Message from Dr. Ware

Dear Heather,

Thanks for your note. I am sorry to be tardy in my response, but I have
been very busy getting ready to move my laboratory and practice from Duke
to St. Jude Children's Research Hospital in Memphis Tennessee. I will be
moving in a few weeks.

Once I get settled in at St. Jude, I will be able to submit a protocol to
their Institutional Review Board for the collection and analysis of DNA
from PNH patients. At that time, I will certainly contact you for advice
about how to obtain these important samples. My laboratory has the assays
working well, so the analysis should then be straightforward.

Best wishes, Russell Ware


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

From: "H. Huntley"
To:

Dr. Ware,
Thank you for your interest in PNH. It is wonderful that there are so many
doctors committed to this disease. We met at the PNH symposium at Duke
last year and I am a member of the committee for the PNH support group. We
are wondering how the research is going with the Deb Valcik Research Award
and if you need anything (blood samples, patient's charts, etc.) Please do
not hesitate to ask- we are more than willing to help in any capacity that
we can.
Our new web site is www.pnhdisease.org

Thank you again and we look forward to hearing from you.
Heather Huntley
Dx with PNH in 1997
24 years old from Southern Maine





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Silvia

I had an identical situation with my first pregnancy - high blood pressure, low
platelets and an emergency c-section at 31 weeks.  My premature baby (3 lbs. 1
oz.) is now a perfectly healthy 12 year old.  The time in NICU will be rough but
I think all will be fine.

Susan Julien
PNH since 1991

hey hey, just thought id tell you guys about this free debt consolidation site
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I posted this on pnhdisease, if you dont want to be a member anymore just email
pnhdisease-unsubscribe@yahoogroups.com

I just read and signed Tara's guestbook. What a strong girl.

Alison

-----Original Message-----
From: Margaret Norton [mailto:mnorton@...]
Sent: Sunday, May 23, 2004 7:42 AM
To: PNHdisease@yahoogroups.com
Subject: [PNHdisease] Brandy and Tara

Hi all--

A couple of our members are in need of our support.

Brandy (radiophish) had her baby on Friday, 12 weeks premature.  It's
a girl--McKenna Briane--and she weighs 2 lbs. 1 oz. and is 12" long.
Really tiny!  Brandy's blood pressure was going up and her platelets
were dropping, so her doctor made the decision to do an emergency C-
section.  Brandy is doing well after surgery and a transfusion, and
McKenna is also doing well considering her size.  As you can imagine,
Brandy and Kelly are elated and worried at the same time.  I sent
flowers on behalf of the group, but I know it would be a big lift for
her to get cards from all of us individually, too.  She is at
Lutheran Hospital of Indiana, 7950 W Jefferson Blvd, Fort Wayne, IN
46804  Phone: (260) 435-7001 until Tuesday.  She'll be going home on
Tuesday:  Brandy and Kelly Richards, 5010 S. Garrison St., Fort
Wayne, IN 46807.  McKenna will be in the NICU for at least 8 weeks.

Tara is also having ups and downs with her BMT.  She went home, then
had to be readmitted, then went home again and may have to be
readmitted.  You can read Marianne's journal at
http://www.caringbridge.org/pa/tara/  I'd encourage you to leave a
message on the guestbook and send her a card:  Tara McCafferty,
Hospital of the University of Pennsylvania, 3400 Spruce Street,
Philadelphia, PA 19104.  I don't have their home address.

Thanks, everyone.
Margaret





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Hi all--

A couple of our members are in need of our support.

Brandy (radiophish) had her baby on Friday, 12 weeks premature.  It's
a girl--McKenna Briane--and she weighs 2 lbs. 1 oz. and is 12" long.
Really tiny!  Brandy's blood pressure was going up and her platelets
were dropping, so her doctor made the decision to do an emergency C-
section.  Brandy is doing well after surgery and a transfusion, and
McKenna is also doing well considering her size.  As you can imagine,
Brandy and Kelly are elated and worried at the same time.  I sent
flowers on behalf of the group, but I know it would be a big lift for
her to get cards from all of us individually, too.  She is at
Lutheran Hospital of Indiana, 7950 W Jefferson Blvd, Fort Wayne, IN
46804  Phone: (260) 435-7001 until Tuesday.  She'll be going home on
Tuesday:  Brandy and Kelly Richards, 5010 S. Garrison St., Fort
Wayne, IN 46807.  McKenna will be in the NICU for at least 8 weeks.

Tara is also having ups and downs with her BMT.  She went home, then
had to be readmitted, then went home again and may have to be
readmitted.  You can read Marianne's journal at
http://www.caringbridge.org/pa/tara/  I'd encourage you to leave a
message on the guestbook and send her a card:  Tara McCafferty,
Hospital of the University of Pennsylvania, 3400 Spruce Street,
Philadelphia, PA 19104.  I don't have their home address.

Thanks, everyone.
Margaret

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Like Most I was in Financial dispair.
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This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe.
by sending a mail here pnhdisease-unsubscribe@yahoogroups.com

Emma!

How have you been?  I haven't seen a post from you in quite a while,
and it's good to hear from you.

How have your counts been since getting rid of your spleen?  (I am
thinking of starting a "spleen awareness" campaign, since it's
something most people never think about, and it has to be one of the
funniest names of any organ in the body.)

Margaret

--- In PNHdisease@yahoogroups.com, eprit1572@c... wrote:
> Sara,
>      The Merina IUD has been wonderful for me.  I' ve had it over 3
years now
> and only spot minimally during a period.  My team of doctors at
Duke
> researched and approved the IUD for my case so I'm sure it is worth
discussing with
> your doctor.  I also experienced hemorrhaging from my cylcles since
I am on
> Coumadin and had low platelets.  Hope this helps!  Welcome to the
group!
> Emma

Sara,
      The Merina IUD has been wonderful for me.  I' ve had it over 3 years now
and only spot minimally during a period.  My team of doctors at Duke
researched and approved the IUD for my case so I'm sure it is worth discussing
with
your doctor.  I also experienced hemorrhaging from my cylcles since I am on
Coumadin and had low platelets.  Hope this helps!  Welcome to the group!
Emma

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There are 2 messages in this issue.

Topics in this digest:

1. Article on PNH in the Blood Journal
From: "jnb2jnd"
2. birth control drugs for people diagnosed with pnh?
From: "fairy_child_83"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sat, 24 Apr 2004 18:04:30 -0000
From: "jnb2jnd"
Subject: Article on PNH in the Blood Journal

Hi I'm new in this group. My name is Jane & I was diagnosed with PNH
in 1997. I was wondering if anyone has read the article "Primary
prophylaxis with warfarin prevents thrombosis in PNH" in the Blood
Journal from November of last year (2003)? It's a little confusing
(for me at least) but it was mention to me by my doctor at NIH. They
hope to start a similar clinical research on Warfarin.

I'm just trying to read & get any and all information I can on the
study & the drug. Does anyone have any info for me?

Thank you for any info you may have for me.
Jane
Springfield, VA.



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sat, 24 Apr 2004 18:09:01 -0000
From: "fairy_child_83"
Subject: birth control drugs for people diagnosed with pnh?

hello everyone. i was wondering if anyone knew of any birth control
drugs to help regulate periods besides the pill and patch. since i
have pnh the doctor doesnt think they would be good because of the
estrogen in them which are blood thinners. ive also tried the depo
provera shot awhile ago. didnt like it. it was nice loosing my period
for awhile but than it came back stronger and heavier. its taken
awhile now for my preiods to be normal. they are so heavy when i get
them. i will never take that shot again. its no good. dont mess with
nature. and now due to the reason that i have those heavy periods i
have to get blood transfusions more often and even went thru the atg
treatment in dec. i just pray things start working better for me. so
if anyone knows of any drugs to help with that please let me know.
thanks
Sara



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This email was sent because you joined our group.
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Hi all--

The previous message is not from one of our regular members, but
someone who joined in order to promote a product, which is against
Yahoo's policy.  If we had a moderater, this message could be
removed, but we don't . . . which is one of the reasons we started
the new group.  If you are new and really want to learn about PNH and
interact with PNHers, our new group is located at www.pnhdisease.org.

Margaret

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There are 3 messages in this issue.

Topics in this digest:

1. WHOSE GOING?
From: Fab1artist@...
2. Re: WHOSE GOING?
From: "H. Huntley"
3. Re: WHOSE GOING?
From:


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Mon, 10 May 2004 15:21:39 EDT
From: Fab1artist@...
Subject: WHOSE GOING?

SINCE I WENT LAST YEAR TO THE AA/MDS CONFERENCE IN SAN FRANCISCO AND IT WAS
REALLY GOOD. THE EXTRA PLUS WAS MEETING MANY PNHERS. ANYWAY, WHO'S GOING THIS
YEAR TO BALTIMORE?
ADRIENNE EWING-MEYER
PNH SINCE 2001
ALBUQUERQUE


[This message contained attachments]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Mon, 10 May 2004 15:34:41 -0400
From: "H. Huntley"
Subject: Re: WHOSE GOING?

I am going. I am really looking forward to it.
Heather from Maine
Dx in 1997
----- Original Message -----
From: Fab1artist@...
To: PNHdisease@yahoogroups.com
Sent: Monday, May 10, 2004 3:21 PM
Subject: [PNHdisease] WHOSE GOING?


SINCE I WENT LAST YEAR TO THE AA/MDS CONFERENCE IN SAN FRANCISCO AND IT WAS REALLY GOOD. THE EXTRA PLUS WAS MEETING MANY PNHERS. ANYWAY, WHO'S GOING THIS YEAR TO BALTIMORE?
ADRIENNE EWING-MEYER
PNH SINCE 2001
ALBUQUERQUE


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[This message contained attachments]



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Message: 3
Date: Mon, 10 May 2004 09:01:50 -1100
From:
Subject: Re: WHOSE GOING?

Hi Adrienne--

I'm going!

Margaret
Margaret Norton
Research Associate in Horticulture
Department of Natural Resources & Environmental Sciences
University of Illinois
258 Edward R. Madigan Laboratory
1201 W. Gregory Drive
Urbana, IL 61801
phone:(217) 244-5415
e-mail: mnorton@...


[This message contained attachments]



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Hi Adrienne--

I'm going!

Margaret
Margaret Norton
Research Associate in Horticulture
Department of Natural Resources & Environmental Sciences
University of Illinois
258 Edward R. Madigan Laboratory
1201 W. Gregory Drive
Urbana, IL 61801
phone:(217) 244-5415
e-mail: mnorton@...

----- Original Message -----

From: Fab1artist@...

To: PNHdisease@yahoogroups.com

Sent: Monday, May 10, 2004 3:21 PM

Subject: [PNHdisease] WHOSE GOING?

SINCE I WENT LAST YEAR TO THE AA/MDS CONFERENCE IN SAN FRANCISCO AND IT WAS REALLY GOOD. THE EXTRA PLUS WAS MEETING MANY PNHERS. ANYWAY, WHO'S GOING THIS YEAR TO BALTIMORE?

ADRIENNE EWING-MEYER

PNH SINCE 2001

ALBUQUERQUE

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Welcome to our new member, Janis Moore.  Janis, I hope you'll
introduce yourself to the group.  We have begun a new PNH website at
www.pnhdisease.org, which is where most of the posting goes on now.
I hope you'll also join there.  It has a lot more to offer, including
a FAQ, links to informational sites, members' sites, medical
articles, a physicians listing, and of course, the message boards!

I'm assuming from your e-mail address that you're a dog trainer.
That sounds like a neat occupation--it has always fascinated me what
dogs can do.

My name is Margaret, and I've had PNH for 42 years now.  I'm
fortunate in that I don't have many of the day-to-day challenges that
a lot of PNHers have, though I do have clotting problems.  Do you
have PNH?  Or are you a friend/family member?

Again, welcome--I'm glad you found us!

Margaret