Experiences with

Alpha-mannosidosis

I was diagnosed with AIH in 2012 and a few years later crossover with PBC was confirmed. I also have alpha 1 antitrypsin deficiency. Triple whammy! I’ve been on Azathioprine and Urso for many years as I was diagnosed early. I’m fortunate that my liver results are within the normal range and I have

Here is my wifes Biopsys from Nov of 2020 STEATOHEPATITIS (SEE COMMENT), 'There are 9 portal tracts represented. A trichrome stain shows extensive pericellular fibrosis and bridging fibrosis. A PAS with diastase is negative for alpha-1-antitiypsin inclusions. A reticulin stain shows a maintained architecture

Hello all, got my cirrhosis dx in march from a biopsy, however I have the full report, is there anything else of note from it other than I have cirrhosis from fat in the liver? The biopsy followed a high fibroscan read of 30.7kPa. Thank you Specimen: Liver, very high fibroscan reading ?cirrhosis

Up until 23rd December 2022 I thought I was quite well and healthy and rarely needed to visit our GP. Out of the blue on the 23rd December 2022, I started to vomit up approx. 3 - 4 pints of blood, as you can imagine my wife and I were in shock from the whole episode. Following an emergency admission

Following on from my post towards the end of last year I am still in a similar position. Various scans continue to show some type of abnormality that the doctors are not sure about, mainly linked to my 'deranged blood test results' and dilated bile ducts ("extra-hepatic bile duct is dilated, measuring

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