HI Nik37 and welcome. Don't worry abut the spelling. I only have emphysema so I can't really help you with the problem but I'm sure someone will be along who can.
Hi,
Do you know what phenotype you have? (Gene type)
I had loads of tests and i have an alpha 1 deficiency? Luckily, if you are going to have it, i have the best type to have and it is not significant, it does not really contribute to my problems.
Alpha 1 is pretty specialist stuff. Get some advice and perhaps specialist referral.
Hi Nik, I discovered I had Alpha aged 42 I am now 67!!! The last 2yrs I have had lots of infections. Like you I have the same things. I see Proff in Alpha Research in Birmingham it is called ADAPT. If you would like to chat with me my num is 07720351534 x
There is a clinic for people with Alpha-1 antitrypsin deficiency at the Royal Free in London. The Birmingham place is primarily research, and only for lungs. Alpha-1 can affect liver and skin and other connective tissues as well as lungs.
For information about Alpha-1, I recommend the American websites alpha-1foundation.org and alpha1.org. On Facebook, there are a lot of groups for people with Alpha-1. In the UK, join Alpha-1 Advocacy & Action Coalition, for information, support, and advocacy efforts to improve health outcomes for people in the UK and elsewhere.
Please visit the Alpha-1 UK Support Group website: alpha1.org.uk/ we are a not for profit organisation founded in 1997 by those diagnosed with the genetic condition Alpha-1 Antitrypsin Deficiency dedicated to help, advise and support fellow sufferers, their families, carers and friends. We are a registered Charity in England and Wales (1146330) Scotland (SC043177) If you would like our Alpha-1 Information Pack please e-mail your address to infoalpha1uk@googlemail.com
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