Experiences with

Alpha-mannosidosis

Id like some advice on whether i should increase my Levo or T3 dosage, if i need to take my supplements, if these could be causing more harm ? And also if anyone is knowledgeable on the other blood tests , much appreciate any advice or insight . Im constantly feeling like there is something else '

I was diagnosed with alpha-1 antitrypsin deficiency over 2 years ago. I now have emphysema and high white blood cell count. But my doctor says I no longer have alpha-1 antitrypsin deficiency. Is this possible??

You are a wonderful group of caring people. I am new here and have learned a lot and found some peace reading your forum. I need help finding proper medical care for myself but don't know where to turn. I am hoping someone can give me ideas on how to proceed. I am a 67 year-old female in the USA.

does anyone have any info about this? My daughter has just been diagnosed as a carrier.

COVID-19 disproportionately impacted some more than others. Although we were all thrust into uncertainty when the pandemic hit, arguably, those with lung conditions were at the forefront of concern. Today, Bernadette tells us about her story of living with chronic obstructive pulmonary disease (COPD)

 I hope this list helps others read their blood work panel.. I'm not sure if they are the same in the UK. A1A Alpha-1 Antitrypsin A1c Hemoglobin A1c AB Antibody ABG Arterial Blood Gas ABRH ABO Group and Rh Type ABT Antibody Titer ACA Anti-Cardiolipin Antibodies ACE Angiotensin Converting Enzyme

hi all, does anyone have any knowledge of low alpha-1 antitrypsin I had some blood tests and all of the bloods were normal accept a slight low level of this. So I have to have another blood test next week.i made the mistake of looking on Google and it doesn't sound good at all

Does anyone know anything about Alpha-1 antitrypsin deficiency?

Hello everyone, I am based in the UK. My Dad told me to get tested and I did and I have tested + for alpha 1 antitrypsin deficiency. My GP will not do any follow up appointments as they say I am symptomatic and there for nothing else can be done. This leaves me feeling very vulnerable and uniformed.

New research results show that a new form of gene editing is efficient in correcting a mutation in patient cells with the monogenic disease Alpha-1 antitrypsin deficiency (AATD), a common inherited disease that affects the liver and the lungs. This new approach, called base editing, is different from

Greetings, fellow travelers: Received a few simple test results back today as a check in. I'm a Type 2 diabetic, with NASH (F2, S3 as diagnosed in November 2020). I also carry a mutant gene for Alpha-1 Anti-Trypsin Disorder, which complicates liver function through binding proteins. Total Cholesterol

Started my bemfola or follitropin alpha injection. Any advice? First scan on monday.

Hi, everyone. I'm new here. I was hoping to get some thoughts on Alpha-1. I'm a 38, female, non-smoker. My paternal grandfather was told that he is a carrier of Alpha-1 and the family should be tested. He has mild COPD. My maternal grandfather died in his 50s of emphysema. My maternal uncle is also

Hello, my liver dr ordered this test due to having slightly low oxygen saturation when I saw him. My chart doesn’t say much except my value is MS and I have no idea what that means. A google search suggests MS is not at and increased risk for liver disease but then another category said I’m SS meaning

Hey, hope you're well! I was just wondering if anyone knew whether the vapour from vaping is bad for someone with alpha-1-antitrypsin deficiency (AATD)? Can the chemicals produced by vaping trigger emphysema? Thanks :D

Hi All, I'm new to this, both in terms of the site and COPD. I've (due to COVID-19 outbreak) got a 'working diagnosis' of COPD, I'm unable to have a Spirometry done at the moment to confirm the diagnosis. Both the GP and my nurse have agreed it is a case of purely establishing what stage I am at, rather

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

[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

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

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