Alpha-1 Antitrypsin Deficiency Support Group

My entire family for atleast 5 generations has Alpha1, my grandfather to my children. It is scary and painful and depressing all in one. The dr's will often leave you more confused than anything else. As for treatment you can get on Prolastin (although it is hard to get on) It prolongs your life and makes things more bearable. I dont have to use it yet. Although i use Symbacort for the SOB and have liver and lung issues with the Alpha1. If you let it it will knock you off your feet. Your husband will you need you more now than ever. Just to let you know. Once the SOB (Shortness of Breath) kicks in its hard to beat. Even with Oxygen. I was diagnosed in 2002 but just because I put it off, I knew since prob 1995 but it is just part of our family"s existance so we just live with it and pretend it will go away, which it doesnt.

Meechelle
s

Hi Tammy

I hope you are well and getting somewhere with your research, I have just joined the group to respond to you.

I am piZZ aged 36 with 55% lung capacity, I am lucky that I was diagnosed in 6 months of my initial problems being detected during a life insurance check. I m also from the UK...

I have found this web site to be very good, http://www.alpha1awareness.org.uk/f... it does have a lot of easy to read material on the site and they are also able to send leaflets to you - not sure if you are US but hey you can only ask ;-)

I would also look for Professor Lomas on the internet, he is the consultant that I am under and I believe he is a respected figure in the world as he travels to the US alot.

My understanding (in really simple terms) of what is wrong with me is that my liver produces a protein but unfortunately this is badly formed so it doesnt leave my liver, in normal people this is released and used by the lungs to protect it from pollution and infection. I have been a smoker for 20 years and this obviously hasnt helped, but my main issues seem to stem from a chest infection about 4 years ago. I have been left with emphasyma in the lower parts of my lung (typical to a A1ADT sufferer). Obviously now I have gien up smoking, reduced my alcohol intake (its no fun being piZZ) hav a yearly flu jab and a five yearly pheumonia jab.

In short your husband (if he hasnt already) needs to make the best of what he has, no smoking, reduce alcohol intake to ease the liver and try and improve his general fitness (evening walking is an improvement - its all I can do). I believe in the US there are therapies available that arent signed off in the UK (Augmentation) where he plasma from a 'normal' person is injected into a sufferer. From talking to Professor Lomas his view is that there isnt enough evidence for us to know if this is the silver bullet we wish for, but all sufferers can do little bits themselves to make sure what we have left is as strong ass possible.

I do feel for you and your husband, as my partner and I know exactly what you are going through. But the most important thing is to be positive, we have our first child due this week and we already know they will be piZM - my partner was pregnant before my diagnosis - so we know that we have to be positive and educated for their sake s well as mine