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Alpha 1-antitrypsin deficiency

(7 Posts)
roundthebend4 Wed 21-Jul-10 14:38:52

Just wondered if there is anyone else with children or family memeber with this struggle to find information on it

cupofcoffee Wed 21-Jul-10 19:25:56

Have you heard of this support group?

roundthebend4 Thu 22-Jul-10 05:46:44

no I have not Ty all sights i have found have been either Us or Australian or deal with the liver in children where its hitting dd lungs already and she is only 7

cowboylover Sat 04-Sep-10 20:19:24

Where are you baised?

I have Alpha1 and am part of a great foundataion which I found has been excellent in helping me with inftormation and putting me in touch with other similar people although I agree most information does seam to be about lungs where as I am liver effected.

Check out:

www.alpha1awareness.org.uk/welcome.htm

If I can help please let me know x

CrossWhy Mon 06-Sep-10 12:19:20

I used to work for a company that was manufacturing that protein and had a product in clinical rials until carpet baggers bought into the company and forced it into liquidation so they could make 2p a share profit.

Anyway, link cowboylover gave is the best I know of. Prolastin is the name of the drug treatment and there are some useful links on its webpage if you haven't already looked there.

purplewednesday Mon 06-Sep-10 13:14:26

Have you tried the british liver trust website?

Belle89 Fri 10-Jun-16 19:30:57

Hi old post i know, is there anyone with experience of this i can ask a few questions to?

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