Alpha 1-antitrypsin deficiency
Discussion
Well unfortunately my fiancée has this rather rarely diagnosed condition. I think luckily she's got results in the early stage (well going for appointment to find out how far along). It was to be expected that she was atleast a carrier of the disease; her mother and brother are both carriers whilst the sister has unfortunately the most developes stage. Her sister is only 18 and will have 10 years best (but she does have other stuff wrong with her aswell).
Research suggests she has a 16% of making it to 60 - she's only 21 now. The plan is to do everything we can whilst we're young as we have no idea what may happen when she gets older (luckily we have funds to do a fair bit of stuff).
So I'm asking if anyone has any advice to prolong her life expectancy.
So far reasearch has advised to get air con in the house (on the bright side win for me as I nearly died in the heat wave).
Suggest we move to sea side where air is cleaner.
Get rid of pets (don't want to
)
Internet provides some other suggestions too but those who have dealt with it would give the best advice
Research suggests she has a 16% of making it to 60 - she's only 21 now. The plan is to do everything we can whilst we're young as we have no idea what may happen when she gets older (luckily we have funds to do a fair bit of stuff).
So I'm asking if anyone has any advice to prolong her life expectancy.
So far reasearch has advised to get air con in the house (on the bright side win for me as I nearly died in the heat wave).
Suggest we move to sea side where air is cleaner.
Get rid of pets (don't want to
)Internet provides some other suggestions too but those who have dealt with it would give the best advice
http://alpha-1foundation.org/what-is-alpha-1/?c=06...
I don't know anything about the illness so can't comment. The above was the best link I could find. A general comment would be that it's very difficult to predict when someone is going to die, you have to remember that many people will already have compounding health factors that make these averages unreliable.
The only other advice I can offer is that be wary of the miracle cure. There is always a charlatan offering a quick fix, approach things with an open mind, but don't be so open minded your brain falls out. Be inclined to trust websites citing reputable papers like those found on medline, science direct etc. before a quack cure like Homeopathy, or some odd plant extract.
Forgive me if I'm over stepping the mark but I guess there's two ways to approach your situation. One is despair of losing some of your life, or the other is to use this to realise a perspective on how precious your time together really is.
Personally I doubt the sunset will ever look as beautiful as the last time I watch it.
I don't know anything about the illness so can't comment. The above was the best link I could find. A general comment would be that it's very difficult to predict when someone is going to die, you have to remember that many people will already have compounding health factors that make these averages unreliable.
The only other advice I can offer is that be wary of the miracle cure. There is always a charlatan offering a quick fix, approach things with an open mind, but don't be so open minded your brain falls out. Be inclined to trust websites citing reputable papers like those found on medline, science direct etc. before a quack cure like Homeopathy, or some odd plant extract.
Forgive me if I'm over stepping the mark but I guess there's two ways to approach your situation. One is despair of losing some of your life, or the other is to use this to realise a perspective on how precious your time together really is.
Personally I doubt the sunset will ever look as beautiful as the last time I watch it.
BlackVanDyke said:
I'm really sorry to hear it. It's a nasty double whammy when it's something potentially scary AND nobody's heard of it. I guess it might be possible to manage the pet shedding a bit with lots of grooming, baths, high-grade hoover etc?
To be honest they don't shed much unless it's warm anyway.I'm surprised no one on here has heard of it, I know it's not common but it's not classed as rare either
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