Alpha 1 Antitrypsin Deficiency - Specialised Services?

Alpha 1 Antitrypsin Deficiency - Specialised Services?

We have been left behind in the wake of the reformed new NHS, all the rhetoric, parliamentary patient day and promises of a Highly Specialised Service for A1AD patients all seem to be lost, nothing at all is happening to help these very ill and desperate cohort of patients in the New NHS. Appeal to Sarah Watson and Professor D A Lomas please doing nothing is unacceptable. Patients are desperate they need these services and they need augmentation therapy in accordance with ATS/ERS, Alpha 1 Foundation and all advocacy groups recommendations. Picture below Margaret Millar 52 left with no immune system open to all pathogens, community acquired pneumonia, Sepsis, colds, flu. I attended an Alpha 1 clinic in the UK for 5 years, still no therapy, A1AD patients need agumentation therapy to inhibit Human Neutrophil Elastase HNE. Almost 10 days out of hospital I am burning up my mouth, insides my whole body systemically and totally obliterated.

9 Replies

  • Hi margaretmiller, I'm a recently diagnosed alpha 1 ZZ phenotype and although I am under professor Stockley at the QE hospital birmingham, I am scared of this disease and my outcome, but have to go along with any treatment they have available. Take care x Sonia x

  • Please join us on Facebook Alpha 1 Advocacy & Action. We are a pro---a

  • pro-active advocacy group that will not take no for an answer.

  • Please join us on Facebook Alpha 1 Advocacy & Action. We are a pro---a

  • Thanks for helping raise much needed awareness , we can keep trying to raise the profile of this disease and any posts are welcome or if your alpha affected join up on facebook to alpha one action and advocacy coalition group, we need to put on as much pressure as we are able to get 'therapy' into the UK and for every alpha one patient in need, here. It is vital we have continued support, many thanks Margaret Millar for highlighting the danger of the this stealth disease, and as I have mentioned before here if your a copd patient please ask for the test for alpha one, as you indeed could be one, many copd patients are up to 3 per cent of all copd patients are suffering the wrong diagnosis, so if you are concerned ask for alpha one test!! .....

  • Hi Flo1 I totally agree with you I have COPD I am a ex smoker Mum had COPD I have just received a test kit from Birmingham QE for alpha 1 I'm going to do the test after Christmas take care

  • Could someone please tell me why this is in the Pulmonary Fibrosis section and not in the COPD section? I would be interested to know.

  • ttt

  • Morning Margaret ....... Sheron (FB)

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