Alpha1 Antitripsin

Hi to you all fellow sufferers. The plight of Alpha1 sufferers seems to have diminished under the radar of medical research. No new info regarding new trials or the Birmingham QE research project. Whilst I accept there is generally not a lot that can be done with Emphysema it would be nice to hear that some research is being carried out to try and stop our white cells from eating more of our lungs.

That's off my chest now but I'm still looking on the bright side even though I have felt c*** for the last 2 days.

take care all and keep warm and active

8 Replies

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  • Hi mike, have u rang or spoken to anyone at the QE, as my last visit there was the end of January this year, although unless I deteriate I won't see them again now for another year, had lots of tests done, gave a bit of blood to research, advice on what to expect and outcome as it stands at present, and off I went.

    Do feel let down by it all but hey ho, have to carry on.

    Take care xx Sonia xx

  • Hi Sonia

    Yes I used to go every year until last year when I received a letter saying the research program is closing due to lack of funding. Unless that was a ruse to get rid of me as I am outside the QE area. I don't know but nothing about us on the BLF website

  • Bronchiecasis has for many years fallen under the radar with regard to trials and under funding, but I feel particularly for you Mike with Alpha 1 and those with other genetic causes such as PCD, who along with us are funded in an as and when manner.

    Glad you are looking on the bright side hun and hope you feel better soon.

    love cx

  • Hi Mike, sorry you've been feeling under the weather, hope you feel better soon! I'm not holding my breath waiting for help with A1 Antitrypsin as I'm a mz , I was really hoping they would help Sonia in Birmingham, very dissapointed for her. Take care, huff x

  • Hi huff, I did find the staff at the adapt clinic in the QE brill and I suppose without proper funding there is only so much they can do. But I find when I go to my gp's they are quite dismissive when u tell them ur symptoms and ask if it's related to the alpha 1. Reading about being a ZZ alpha 1 is quite scary but other then the medical treatments nothing has been offered regards the mental side of it. Luckily ( I suppose ) all my kids are MZ ( carriers ) and not the ZZ like me, horrid genetic disease as is others I know but lack of help is a big let down.

    Hope ur well huff, take care xx Sonia xx

  • Thanks for that. I am SZ and my parents must have been at least carriers. I really hope you don't have the misfortune of passing it on to your kids

  • My son is expecting his 1st baby in 4 weeks and because hes an MZ his girlfriend had to be tested too, cuz if she was an MZ their daughter could be a ZZ, luckily she's an MM so at worst their daughter will be an MZ, still not nice but better.

    Don't think it matters ur outside of the QE area as I believe there is only 3 clinics that run research on alpha 1, that's in London, Birmingham, and Scotland. Maybe I'll be the same if there's no new outcomes I'm not needed anymore either , unless something happens new. Take care Mike xx sonia xx

  • Hi Sonia, staying positive is vital to feeling well, its the only way to be! If we were in a different country you would be having better treatment but its a matter of money or lack of it. Its probably because I started smoking at 16 that my emphysema started at a young age , may your youngsters never smoke or have multi_fuel stoves..it definitely helps trigger this emph'

    Hope you are feeling well as can be Sonia, the days are getting warmer and we can get out in the fresh air! 😊 hugs huff xxxx

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