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September 04, 2010, 08:02:39 PM
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Three products now FDA-approved!
- Cinryze, approved to prevent HAE attacks.
- Berinert, approved for treating acute facial and abdominal HAE attacks
- Kalbitor, approved for treating acute attacks in patients 16 yrs and older. The product is delivered through subcutaneous injections

Please contact the HAEA's Patient Services group for more information

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| |-+  Youth with HAE
| | |-+  Just want to reach out :) 		« previous next »
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Author Topic: Just want to reach out :)  (Read 71 times)
julia1001
Jr. Member
**
Posts: 2
« on: July 17, 2010, 01:54:34 AM »
Hello all, I don't know how it took me so long to actually find this forum... but now that I have I'm pretty stoked! I as well as my father, brother, and four sisters all have HAE. I have been through full on throat attacks, have been intubated, in the ICU for days, and just about every other HAE trauma drama out there. I went through several different danazol therapies (increasing/decreasing dosage) and finally got approved for Cynrize five months ago! I was instructed by a brilliant at home nurse very slowly for the first two months, and have been self-infusing for the last three. I have extremely damaged veins from so many hospital visits, and also have very hidden ones. I have found all the tricks to get my veins infusable :P and consider myself to be very knowledgeable on how to work with veins in the body. I have taught and infused my older sister who just recently got approved for Cynrize. Connecting with people with HAE through here excites me a lot, especially people close to my age. So yeah... this is great!
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lacey
Jr. Member
**
Posts: 12
« Reply #1 on: July 18, 2010, 05:51:04 PM »
hi!!! my names lacey.
Im 19. i use cinryze too! i love it. sorry to hear all that you have been through i can honestly say i know how it feels. glad u found this message board!
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blessed365
Full Member
***
Posts: 175
« Reply #2 on: July 26, 2010, 10:52:53 AM »
julia,

I too have been intubated 3 times and was going to the hospital around 24 times a year so like twice a month!  So i definitely know how you feel.. I may need your help with the tricks with the sticking! 

Thanks for all your help in advance!
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