I'm a ZZ Alpha, liver affected and I wasn't diagnosed until 2 yrs ago, however sadly, I have lost 2 brothers to it both in their early 50's. I'm now 67 yrs old and under the care of a great doctor out of Shands Hospital, UF Health. Thank you for your dogmatic, ongoing research and interest in AAT. and thank you for educating others.
unfortunately there is not much to do for the liver except live healthy, not drink alcohol, stay fit and active, don’t take too much pain medication or other liver toxic meds. And if the RNA stuff comes through, it means life long weekly infusions with AAT to protect the lung. Obviously better than liver cirrhosis/failure.
PiMZ is not that bad. Only one allele is affected. Heterozygote form. Be sure to not damage liver with alcohol, pain medication etc. Live healthy. Avoid other diseases. Chances are good that lungs will never be affected and liver most likely not or only little. How high is ur AAT blood serum levels? If it’s normal range (which is possible with PiMZ) the lungs are protected. Don’t smoke obviously or choose a job with dust/smoke.
I hope there is a cure soon I hope so because it's hell being an alpha one there's no way to live a life is miserable and painful and it's unbearable to be one it's my mom's that's got me down ever since I was a little baby I've always been sick with colds and bronchitis and pneumonia
you should mention that if you turn off the AAT prodiction by RNA it means lifelong weekly infusions with AAT. Because no misfolded AAT is good for the lung but ZERO or very little AAT at all is very bad for the lung.
I was piMZ and liver effected. They rested and I am genotype Z now.... NHS have left me in the shadow with no follow up.. No advice, no referral. I am struggling.. I'm 33 years old and other health problems going on... Swelling everywhere and I have no one to turn too. I am so fed up
I'm an alpha one but I don't have no one in my corner I'm 71 years old and it's probably too late for me I wish I had a doctor and care about me and help me
I'm just trying to get help from my granddaughter to get her tested no one wants to test her she's 11 years old and she needs to be tested what do you do
@@StephyPlantBased It is approved but too expensive for the region, it is said. And that the effect is too low from the treatment. Don't know if I totally believe it. I think the research in Sweden wants us zz for themselves to experiment with.
@@susannegidlof9842 yea, i don’t know. I ve read different studies now. Some say it doesn’t have a huge effect. Most likely needs double the dosage to be effective/more effective. And yes, it’s so expensive. Also having a weekly infusion for the rest of the life sounds bad to someone like me with pretty bad veins. They would have to figure out smth like subcutaneous applications but i think A1AT is too huge to be applied subcutaneously or intramuscular 😢 I think they are work on A1AT for inhalation 🤔
Im in the UK. Just got diagnosed with this. Im just in the lower scale. Dont know how bad this will get. Getting a scan in a couple of weeks. Lets see what happens. I work in a hospital so anyone l come across with COPD l can get them checked out.
A1ad sounds sus to me. Since it's genetic you'd get damage since birth, not between 20 and 50. All it might be is it predisposes to more damage from smoking and and alcohol (liver, which also produces the antitrypsin)
I didn't get diagnosed until his age 50 and my lungs are destroyed I could have maybe had a lung transplant no one told me about Alpha One till I was 71 no it's too late for me
I'm a ZZ Alpha, liver affected and I wasn't diagnosed until 2 yrs ago, however sadly, I have lost 2 brothers to it both in their early 50's. I'm now 67 yrs old and under the care of a great doctor out of Shands Hospital, UF Health. Thank you for your dogmatic, ongoing research and interest in AAT. and thank you for educating others.
did they drink alcohol? Were they early diagnosed with AATD ?
unfortunately there is not much to do for the liver except live healthy, not drink alcohol, stay fit and active, don’t take too much pain medication or other liver toxic meds. And if the RNA stuff comes through, it means life long weekly infusions with AAT to protect the lung. Obviously better than liver cirrhosis/failure.
I am PiMZ. Was diagnosed about 5 years ago. Grateful for the research.
PiMZ is not that bad. Only one allele is affected. Heterozygote form. Be sure to not damage liver with alcohol, pain medication etc. Live healthy. Avoid other diseases. Chances are good that lungs will never be affected and liver most likely not or only little. How high is ur AAT blood serum levels? If it’s normal range (which is possible with PiMZ) the lungs are protected. Don’t smoke obviously or choose a job with dust/smoke.
I am an alpha and so grateful for your research 🙏💜
which genotype? PiMZ, PiMS, Pi00, PiZZ….?
@@StephyPlantBased zz
THANK YOU! I recently discovered that I have the alpha one deficiency...this is outstanding news!
I hope there is a cure soon I hope so because it's hell being an alpha one there's no way to live a life is miserable and painful and it's unbearable to be one it's my mom's that's got me down ever since I was a little baby I've always been sick with colds and bronchitis and pneumonia
How are you now ? Do you notice the change in weather affects to more
Exciting research. But the inspirational music is a bit much.
you should mention that if you turn off the AAT prodiction by RNA it means lifelong weekly infusions with AAT. Because no misfolded AAT is good for the lung but ZERO or very little AAT at all is very bad for the lung.
I was piMZ and liver effected. They rested and I am genotype Z now.... NHS have left me in the shadow with no follow up.. No advice, no referral. I am struggling.. I'm 33 years old and other health problems going on... Swelling everywhere and I have no one to turn too. I am so fed up
I'm an alpha one but I don't have no one in my corner I'm 71 years old and it's probably too late for me I wish I had a doctor and care about me and help me
How do you get help I've been on prolactin scene but it's not helping me
I'm just trying to get help from my granddaughter to get her tested no one wants to test her she's 11 years old and she needs to be tested what do you do
I am ZZ & liver is now affected as well as my lungs but in Australia so hopefully we will also get this new drug
the RNA Stuff stops/reduces production of AAT. That means u d need weekly prolastin infusions. It’s expensive.
How wonderful❤️ I live in Sweden zz. Lung is affected. We are not getting prolastina here. Unfortunately. Fantastic news this 🙏
why no prolastin? 😧
@@StephyPlantBased It is approved but too expensive for the region, it is said. And that the effect is too low from the treatment. Don't know if I totally believe it. I think the research in Sweden wants us zz for themselves to experiment with.
@@susannegidlof9842 yea, i don’t know. I ve read different studies now. Some say it doesn’t have a huge effect. Most likely needs double the dosage to be effective/more effective. And yes, it’s so expensive. Also having a weekly infusion for the rest of the life sounds bad to someone like me with pretty bad veins. They would have to figure out smth like subcutaneous applications but i think A1AT is too huge to be applied subcutaneously or intramuscular 😢 I think they are work on A1AT for inhalation 🤔
Im in the UK. Just got diagnosed with this. Im just in the lower scale. Dont know how bad this will get. Getting a scan in a couple of weeks. Lets see what happens. I work in a hospital so anyone l come across with COPD l can get them checked out.
But I was around second hand smoke as a child and I smoked but I'm going on 16 years of not smoking
A1ad sounds sus to me. Since it's genetic you'd get damage since birth, not between 20 and 50. All it might be is it predisposes to more damage from smoking and and alcohol (liver, which also produces the antitrypsin)
I didn't get diagnosed until his age 50 and my lungs are destroyed I could have maybe had a lung transplant no one told me about Alpha One till I was 71 no it's too late for me
My daughter has it.
And I'm only a MZ