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September 04, 2010, 08:19:28 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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| | |-+  Any other kids/teens?		 « previous next »
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Author Topic: Any other kids/teens?  (Read 308 times)
Lisa Simmons
Full Member
***
Posts: 48
« on: January 09, 2010, 08:53:37 AM »
I am 17 currently awaiting final diagnosis of type of HAE and am having a hard time with treatment trials and attacks. The medicine is making me weird- mood swings horrible, memory bad, pains, still swelling at current time though looks like its getting better, and it does not help when i get scared or anxious but i am working on it.
I just want to know if any other kids are out there and what life is like for them with HAE seeing as it usually affects adults. I am hoping to be stablilzed with my propholoatic treatment soon- were doing amicar with prednizone zxyal levora klonopin benadrly and valium right now i think- they keep changing it to see what helps.
Thanks,
Lisa
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malfoyie456
Jr. Member
**
Posts: 3
« Reply #1 on: February 17, 2010, 06:24:48 PM »
Hi Lisa,
Sorry to hear you are having a hard time with HAE, I am 18 and I'm also a sufferer. I'd love to get in contact with you. Let me know if you're interested, give me an email!!

Bye for now,
Katie
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blessed365
Full Member
***
Posts: 175
« Reply #2 on: March 12, 2010, 10:15:47 PM »
Katie,

Hey im sorry to hear you have HAE too! Im 19 and have this also! I recently got approved for berinert and it works greatly! I am currently however still taking Danazol to though 200 mgs daily!!

If you wld like to email me I wld love to hear from you! Godisable7557@yahoo.com!!

Casey
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Lisa Simmons
Full Member
***
Posts: 48
« Reply #3 on: March 13, 2010, 09:49:13 AM »
Katie,
Im not sure how to find your email on here to email you but your welcome to email me back. My email is engodo2525@bellsouth.net
Sorry to hear you also suffer with HAE.
Lisa
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