Understanding alpha1 antitrypsin defiency

[Nik37]

Hi I'm new here I'm 37 and been diagnosed with moderate emphysema , copd , asthma I've had loads of test which found the defiency

I'm so breathless all the time it worrys me that it progressing really quick

Does anyone know if the defency makes it progress quicker? Sorry about spelling

[Puffthemagicdragon]

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.

[Hidden]

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.

Good luck

[wackywalker46]

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

[Hidden]

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.

[Nik37 in reply to Hidden]

Hi dudnt know it could affect skin and other connective tissues ? Do uknow the best place for in information

[Nik37]

Thats interesting to know thanks

[Hidden]

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.

[Nik37 in reply to Hidden]

Thank you

[jlmugford]

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 [e-mail]

[Giaco1]

check into Prolastin C and / or zemira with your Lung specialist. It has helped slow down my progression