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1
on: Today at 04:09:46 PM
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Started by baxtergirl - Last post by baxtergirl
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I was just approved for and already had shipped to my home Cinryze, which looks nothing like I thought! I was wonderning if anyone out there is already receiving their infusions. I have some questions...What happens if I get worse...is there anything else....and how long do they give your veins after sticking them twice a week before they will put in a port...or is it a choice? I am very nervous and have decided to have my first dose at the hospital infusion center and then the home health nurse will come here. How long do we generally have to be on the medicine and most importantly....is there any yucky side effects or benefits that they dont always mention? If anyone could answer these questions I would appreciate it. Also if my c1 was 8....could it mean anything else and maybe its not HAE...what if I take the medicine for nothing? Sorry to ramble...I am just worried.  |
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2
on: Today at 01:23:04 PM
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Started by Michelle - Last post by Laura
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when is this taking place?
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3
on: September 03, 2010, 01:26:04 PM
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Started by Countryrose - Last post by blessed365
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Aurora,
Congrats on the baby hope all goes well! Hope you have a swell free pregnancy. I have read on here that most have some of there best times when they are pregnant because they can actually get cinryze approved.
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4
on: August 26, 2010, 12:57:33 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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5
on: August 26, 2010, 12:56:50 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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6
on: August 26, 2010, 12:56:23 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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7
on: August 26, 2010, 12:51:46 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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8
on: August 26, 2010, 12:50:34 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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9
on: August 26, 2010, 12:50:05 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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10
on: August 26, 2010, 12:48:49 PM
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Started by Michelle - Last post by Michelle
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Dear HAEA Forum Members,
We are pleased to announce that a brand new HAEA web site will soon be launched! We hope you will enjoy the enhanced features of the new www.haea.org - easier navigation, video features and a monthly patient story, just to name a few.
With the redesign of the web site, we are sorry to report that the HAEA Forum will need to be dismantled on September 15, 2010.
In preparation and to facilitate a smooth transition to the Listserv which will remain active, please take a few moments to fill out the HAEA membership form at http://www.haea.org/hae_form.php , if you have not already done so.
Once you have filled out a membership form, or if you are already an HAEA member, please go ahead and join our email support group via the Listserv by clicking on this link :
http://mailman.listserve.com/listmanager/listinfo/discusshae
The Discuss HAE Listserv is similar to the Forum in that it is a private email support group for HAE patients, family members, and care givers. This email group facilitates information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.
If you have any questions or need any assistance, please contact me or your Patient Services Representative. We hope you will enjoy your new Listserv home!
Kind regards,
Michelle Williamson, Director
Patient Services & Clinical Programs
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