alpha 1

Hi there yogadatti.sounds grim,poor you. Our nhs system is a little scarry these days. I hope to persuade my gp to refer me to alpha 1 specialist unit next week. I need more info.I did join the support group. Do you have support from your family?

Hi eccentric...I have a brainAVM......you are borne with them but usually they aren't discovered until they give symptoms or bleed...mine did at 47 in 1997..... Needless to say treatment etc and knowledge were hopeless then....anyway it has been embolised but not obliterated and I have a worse haemorrhage in 2009...,, typically over here they like to leave well enough alone, whereas in USA they would have zapped it years ago...sorry but feeling really peeved with UK at the moment!

Oh and ..... I gave up wheat five months back. Didn't find it difficult. It's helped my breathing, don't know how or why, but it's def made some difference to me.

Hi yogadatti. Someone like me. It's perfectly horrid. My cousin was terribly ill, they just were not getting anywhere with him .52. I suggested he may have a1 .... family up till then didn't take it seriously. He had it. He died.his liver packed up and waiting for a transplant, he died. All very fast. He did have a spell of heavy drinking.
Now the family, so many of them are getting tested.
I've never smoked. Drank some. At 63 I'm finding hills/inclines tricky.
Mainly it's my lungs. Get pneumonia easily.
Tell me bout you?
It's nice people care to goggle it.

Eccentric...I do not have alpha 1 like you...but do know what it's like to have a rare condition.....xx

I also had never heard of it... so Googled it and came up with a support group website.

I hope you find support on here.

I had to Google that one, I've never heard of it.
I hope it's not too debilitating