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Experiences with
Hereditary alpha tryptasemia
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Newly diagnosed with aortic aneurysm and bicuspid aortic valve
I've always had a certain amount of shortness of breath; I was never good at cross-country or sports at school and I remember being given a Ventolin inhaler on the off-chance that I had mild asthma. I also remember that it made no difference. I've been fairly active in my adult life, doing a fair bit
I've always had a certain amount of shortness of breath; I was never good at cross-country or sports at school and I remember being given a Ventolin inhaler on the off-chance that I had mild asthma. I also remember that it made no difference. I've been fairly active in my adult life, doing a fair bit
welshwalker
in
British Heart Foundation
5 years ago
An exciting new development in treating genetic diseases. Alpha 1 antitrypsin deficiency certainly comes the front of my mind among others.
[u]
Doctors try 1st CRISPR editing in the body for blindness.
[/u] Scientists say they have used the gene editing tool CRISPR inside someone’s body for the first time, a new frontier for efforts to operate on DNA, the chemical code of life, to treat diseases. A patient recently had it done at the
[u]
Doctors try 1st CRISPR editing in the body for blindness.
[/u] Scientists say they have used the gene editing tool CRISPR inside someone’s body for the first time, a new frontier for efforts to operate on DNA, the chemical code of life, to treat diseases. A patient recently had it done at the
2greys
in
Lung Conditions Community Forum
5 years ago
Researchers describe unique genetic identity of primordial lung progenitors.
For the first time, researchers describe the genetic program behind primordial lung progenitors—embryonic cells that give rise to all the cells that form the lining of the respiratory system after birth. They believe this study has long-term implications for the treatment of diseases affecting the respiratory
For the first time, researchers describe the genetic program behind primordial lung progenitors—embryonic cells that give rise to all the cells that form the lining of the respiratory system after birth. They believe this study has long-term implications for the treatment of diseases affecting the respiratory
2greys
in
Lung Conditions Community Forum
5 years ago
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Health information review can you help?
Hi everyone, We’re reviewing our health information and would love to hear your thoughts! If you have/had had any experience of these conditions (either you’ve had it yourself, or care for someone who has) please help us by reading through the information and completing this form: https://hello.blf.org.uk
Hi everyone, We’re reviewing our health information and would love to hear your thoughts! If you have/had had any experience of these conditions (either you’ve had it yourself, or care for someone who has) please help us by reading through the information and completing this form: https://hello.blf.org.uk
Carol_ALUK
British Lung Foundation
in
Lung Conditions Community Forum
5 years ago
Cirrhosis as a result of Alpha-1 antitrypsin deficiency (AATD) - does anyone have any experience of this?
Hi Everyone, I was recently diagnosed with "early stage cirrhosis secondary to Non-alcoholic fatty liver disease" and today I had an endoscopy which showed several (non-bleeding) varices. I was chatting to my brother this afternoon about my diagnosis and tests and he just happened to say "do you remember
Hi Everyone, I was recently diagnosed with "early stage cirrhosis secondary to Non-alcoholic fatty liver disease" and today I had an endoscopy which showed several (non-bleeding) varices. I was chatting to my brother this afternoon about my diagnosis and tests and he just happened to say "do you remember
IanM1957
in
British Liver Trust
5 years ago
Alpha 1 antitrypsin question please
Hi- can anyone help? My GP recently requested a blood test for alpha-1 antitrypsin due to some wheezing I have, and a strong family history of COPD. The blood test that was carried out was Serum protein electrophoresis, which came back normal. I asked the GP if A1AT is included in that and she said yes
Hi- can anyone help? My GP recently requested a blood test for alpha-1 antitrypsin due to some wheezing I have, and a strong family history of COPD. The blood test that was carried out was Serum protein electrophoresis, which came back normal. I asked the GP if A1AT is included in that and she said yes
Chris1802p
in
Lung Conditions Community Forum
5 years ago
Blood test results are back and it is good news for me ...
I had blood tests a few weeks ago to test for the Alpha-1 antitrypsin deficiency and they came back as abnormal for some reason. So i had to go for another blood test and have been quite on edge waiting for results till today, wondering what the " abnormality" may be. Thoughts can go from one extreme
I had blood tests a few weeks ago to test for the Alpha-1 antitrypsin deficiency and they came back as abnormal for some reason. So i had to go for another blood test and have been quite on edge waiting for results till today, wondering what the " abnormality" may be. Thoughts can go from one extreme
carrina
in
Lung Conditions Community Forum
6 years ago
32; with emphysema
Hello I have been diagnosed with emphysema and maybe asthma also, I’m 32 years old and currently struggling with the concept, they think I have alpha 1 antitrypsin deficiency but I haven’t had the test results back from this yet. Is there anyone else with emphysema at a young age? I’ve smoked for
Hello I have been diagnosed with emphysema and maybe asthma also, I’m 32 years old and currently struggling with the concept, they think I have alpha 1 antitrypsin deficiency but I haven’t had the test results back from this yet. Is there anyone else with emphysema at a young age? I’ve smoked for
xNellx
in
Lung Conditions Community Forum
6 years ago
Alpha-1-Antitrypsin test question
I recently had a blood test for Alpha-1-Antitrypsin and was wondering about the accuracy of the test, because I was reading that levels can be elevated during an infection. When I had the blood test done I was in about day 4 of a sinus infection that later went to my chest. My test result was as follows
I recently had a blood test for Alpha-1-Antitrypsin and was wondering about the accuracy of the test, because I was reading that levels can be elevated during an infection. When I had the blood test done I was in about day 4 of a sinus infection that later went to my chest. My test result was as follows
tdawg7
in
Lung Conditions Community Forum
6 years ago
Alpha 1 Antitrypsin
Hello, new to here. Just found out I have Alpha 1. Been unwell for about 18 mths and GP's just kept telling me I was ok. Did my own research and knew that my dad had it - just didn't know of the lung side of the disease. My dad died of COPD and his mum pancreatic cancer (also had pernicious anaemia.
Hello, new to here. Just found out I have Alpha 1. Been unwell for about 18 mths and GP's just kept telling me I was ok. Did my own research and knew that my dad had it - just didn't know of the lung side of the disease. My dad died of COPD and his mum pancreatic cancer (also had pernicious anaemia.
HRH8591
in
British Liver Trust
6 years ago
Newly Diagnosed with PBC
Hi, Can someone explain these results? Thank you in advance. Liver (random biopsies): - The specimen is composed of cores of liver parenchyma showing changes of mild steatosis. - Trichrome and reticulin stains showed changes of mild periportal fibrosis, stage 1/4. - Minimal periportal activity is noted
Hi, Can someone explain these results? Thank you in advance. Liver (random biopsies): - The specimen is composed of cores of liver parenchyma showing changes of mild steatosis. - Trichrome and reticulin stains showed changes of mild periportal fibrosis, stage 1/4. - Minimal periportal activity is noted
staylor1776
in
PBC Foundation
6 years ago
Double Whammy
New to this site, enjoy reading the various postings but have not found my double whammy. In addition to the COPD, I have a rare lung disease called alpha 1 antitrypsin deficiency, which has no cure. The only thing they offer is a weekly injection which $10,000 a month. I can certainly rule that since
New to this site, enjoy reading the various postings but have not found my double whammy. In addition to the COPD, I have a rare lung disease called alpha 1 antitrypsin deficiency, which has no cure. The only thing they offer is a weekly injection which $10,000 a month. I can certainly rule that since
Viking007
in
Lung Conditions Community Forum
6 years ago
“New” poster but “old”sufferer!!!
Hello all, have lived with lung problems all my life. I have emphysema and bronchiectasis (the COPD caused by Alpha 1 Antitrypsin Deficiency). I turned 40 last year and had a hospital stay and have not felt my best fir a while so currently feeling a bit sorry for myself that I have never known what
Hello all, have lived with lung problems all my life. I have emphysema and bronchiectasis (the COPD caused by Alpha 1 Antitrypsin Deficiency). I turned 40 last year and had a hospital stay and have not felt my best fir a while so currently feeling a bit sorry for myself that I have never known what
Nibbles77
in
Lung Conditions Community Forum
7 years ago
Misdiagnosis, can I claim?
Hi, I am not sure where I stand with this but I got misdiagnosed with microscopic polyangiitis. I have bronchiectasis and 3 months ago due to a blood test which should have been done in the first place i got told i have mild alpha-1-antitrypsin, I am 39. The problem is due to the diagnosis I was put
Hi, I am not sure where I stand with this but I got misdiagnosed with microscopic polyangiitis. I have bronchiectasis and 3 months ago due to a blood test which should have been done in the first place i got told i have mild alpha-1-antitrypsin, I am 39. The problem is due to the diagnosis I was put
BilboBagshot
in
Vasculitis UK
7 years ago
Mild Alpha-1-antitrypsin deficiency (blood)
Hi, Got my blood results back after switching hospitals and they found this. Is this something to really worry about or just be really cautious as its mild? Cheers
Hi, Got my blood results back after switching hospitals and they found this. Is this something to really worry about or just be really cautious as its mild? Cheers
BilboBagshot
in
Lung Conditions Community Forum
7 years ago
A1A deficiency on Channel 5 right now (8.45pm)
Hi all, on GPs: Behind Closed Doors, just before they went to the ad break an elderly-ish man was told he has alpha-1-antitrypsin from his blood tests. They'll be coming back to this after the ad break so if you have an interest in this, switch on the telly!
Hi all, on GPs: Behind Closed Doors, just before they went to the ad break an elderly-ish man was told he has alpha-1-antitrypsin from his blood tests. They'll be coming back to this after the ad break so if you have an interest in this, switch on the telly!
O2Trees
in
Lung Conditions Community Forum
7 years ago
blood test
good morning all hope you are all doing well on this hot sunny day . I have a question my doc is sending me for a alpha-1-antitrypsin . does any one know why I would need this test and how is it done. as we norm have bloods done in docs surgrey but have been told need to go to hospital for this one
good morning all hope you are all doing well on this hot sunny day . I have a question my doc is sending me for a alpha-1-antitrypsin . does any one know why I would need this test and how is it done. as we norm have bloods done in docs surgrey but have been told need to go to hospital for this one
Lyn1955
in
Lung Conditions Community Forum
7 years ago
can someone clarify please
hi everyone the last breathing test I had done I blew 185 I was told I was stage 2 bordering stage 3 I had one today I'm now 143 can some clarify is this is infact the start of stage 3 many thanks denise sorry ive missed out I have emphazemia and I'm also alpha 1 antitrypsin deficient
hi everyone the last breathing test I had done I blew 185 I was told I was stage 2 bordering stage 3 I had one today I'm now 143 can some clarify is this is infact the start of stage 3 many thanks denise sorry ive missed out I have emphazemia and I'm also alpha 1 antitrypsin deficient
scaife1
in
Lung Conditions Community Forum
7 years ago
sjb53
I have alpha 1 antitrypsin deficiency I would like to hear from anyone with it sjb53
I have alpha 1 antitrypsin deficiency I would like to hear from anyone with it sjb53
sjb_13
in
Lung Conditions Community Forum
7 years ago
Featured Website - The Alpha-1 Foundation
Alpha-1 Antitrypsin deficiency (Alpha-1) is a genetic condition passed on from parents to children that affects the liver and lungs in an estimated 1/2,500 Americans. The Alpha-1 Foundation seeks to provide various resources for this condition as well as advocacy and research materials. In addition to
Alpha-1 Antitrypsin deficiency (Alpha-1) is a genetic condition passed on from parents to children that affects the liver and lungs in an estimated 1/2,500 Americans. The Alpha-1 Foundation seeks to provide various resources for this condition as well as advocacy and research materials. In addition to
Nate_HWN
Administrator
in
HealthWeb Navigator
7 years ago
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