Alpha1 Children
Alpha-1 Kids
Alpha-1 Kids is an American organisation developed by affected families and their physicians to provide information, support and awareness. They write: "It is overwhelming and frightening to hear that your child is Alpha1 Antitrypsin Deficient, but we hope to help you understand what the diagnosis means to you and your family through current information, an open dialogue with professionals and meeting other families like your own".
For more information - Click Here
Parents Forum
 If you are a parent of a child who is Alpha1 Antitrypsin Deficient and you need support and help in understanding what the diagnosis means to you and your family, Alpha1 Awareness UK has introduced a forum where parents will be put in contact with other Alpha families to discuss their child's condition.
To take part in this forum please contact - Parents Forum
Claire's Story
This a story about Claire and her sister. We hope that Claire's words will give courage and hope to parents of Alpha1 children.
I was first diagnosed with alpha1 antitrypsin deficiency (AATD) when I was 6 years old. My sister had been extremely ill from birth with liver problems and was finally recognised as having AATD at 2 years old. The rest of my family were tested and it was discovered that my brother was unaffected but that I had the same genes as my sister (PiZZ).
My parents were advised that I should not smoke, drink or take drugs (not difficult at 6) but that otherwise I would be OK. I’m not sure how much information was given and how much they took in as my sister had developed liver cirrhosis and was terminally ill.
She was kept alive by a cocktail of steroids and a high-protein low-salt diet against the odds until she was 8 years old. At 8, she received a liver transplant just in the nick of time, and although the next 18 months was touch and go she survived.
I kept in good lung health throughout my childhood, with only occasional infections. As I hit my teens the embargo on alcohol and drugs got more and more irritating, but looking back this was probably not a bad thing! At 18 I went to University to study biology. I had a fantastic time but soon broke all the rules about alcohol resulting in one brief hospitalisation for alcohol poisoning. To be honest I wasn’t the only one with that dubious honour and I think it probably had more to do with my poor diet, late nights and low weight than anything else. I had been raised to be excruciatingly clear about the dangers of smoking for someone with AAT, so I religiously abstained from smoking and any other drugs, and I think that was absolutely that right think to do.
After about 8 months my curiosity got the better of me and I pulled up some research papers about AAT from the library. The reported outcomes were bleak and I remember being shocked and quite upset at the depressing future awaiting me; emphysema by my thirties and other complications.
One winter I got a chest infection as so many bugs were going around the halls at that time. I spoke to the university health centre about having AAT and they referred me to a chest consultant for investigations. So it was at 19 that I learned that AATD has a very variable course and that female non-smokers can have a very good prognosis. My X-ray was clear so I pretty much forgot about my alpha1 for the next 10 years.
I’m 32 now and have no major problems with my liver or my lungs. I have always done some form of exercise and I avoid fumes, pollution, cigarette smoking and the usual suspects. After recently meeting lots of other people with AATD at the Scottish Patients Alpha1 meeting, I feel that my knowledge on the subject has improved in leaps and bounds. I am hopeful for the future, as both my sister and I lead pretty normal lives despite being PiZZ.
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