Alpha-1 Emphysema

[Breathe2sleep]

I just found out my diagnosis. It’s “mild”. Anyone else have this?

[Tykelady]

I was diagnosed in 2002 when I gave up smoking. In 2013 my stage was mild to moderate and yesterday when I had my oxygen review I was told it was 'significant' and that I was on everything available to make my life as good as it could be -which I suppose it is.

[B0xermad]

I too have mild emphysema but not sure about alpha 1 part but along side it bronchiectasis and asthma too but it's a good thing to eat healthy and exercise within your capabilities

[PaulineHM]

Sorry to read about your diagnosis. I don’t have full Alpha 1 emphysema, but a form of it.

The important thing is to look after yourself really well. If you can ensure that all your health behaviours are as good as they can be, so meds if you take, exercise, cardiovascular and strength/resistance, super healthy diet, relaxation. Stop smoking if you do. Learn all you can about the condition.

Check in here regularly for support. Keep well.

Pauline

[PW_R in reply to PaulineHM]

are their other forms of alpha 1? I always wondered if genetics played any part in my very symptomatic chronic bronchitis in my mid thirties. Negative for alpha 1 itself

[PaulineHM in reply to PW_R]

I haven’t been formally tested but from the results of scans, my age at fist symptoms , my familial history and phenotype information then in my opinion it is highly likely that I do.

This might help to guide you.

genome.gov/Genetic-Disorder....

Go well.

Pauline

[Maricopa in reply to PaulineHM]

alpha1 is genetic. You get a gene from each parent. One either has or does not have it. They use the term “carrier” for one’s who got a normal gene and an abnormal gene. However, that’s false security as both genes are co dominant. One can be effected negatively having only one abnormal gene.

[PaulineHM in reply to Maricopa]

Thank you for that. Phenotypes in Lung disease are becoming increasingly relevant in developing treatments isn’t it ?

Go well.

Pauline

[TheOldBoy]

I have a single faulty alpha 1 gene and 1 good copy so I have around 60+% of normal blood levels (just outside normal range when measured). I also have ‘mild’ COPD… Smoking history, environmental factors and alpha 1… You need to know your phenotype so you can assess possible influence… I am on a mostly anti inflammatory diet as a precaution against further damage.

Best wishes and good luck, Adam…

[Maricopa]

I am an alpha 1 alelle ZZ. End stage copd. Antitrypsin serum level roughly 15%. Spirometry fev1 is at 20%. So pretty advanced.

[peege]

No, I don't have the Alpha-1 Deficiency Breath2sleep. I always feel for people diagnosed with the Alpha-1 Deficiency, particularly if they're otherwise a healthy non-smoker, just seems so unfair.. I belive there's more than one variety according to posts of members over the years and that it can be hereditary. I imagine as with other lung diseases you can keep the mild by avoiding cold, coughs, pollution/smoke (fags, wood burning, diesel fumes) healthy weight, exercise and diet. Also having your flu, pneumonia & covid vaccinations will help to preserve lung health. See a doctor promptly if you suspect a chest infection.

As you can see there are several members on the forum with copd/emphysema however, if you write Alpha-1 Deficiency in the search bar lots of older posts with replies on it will come up. Good luck, P

[Maricopa in reply to peege]

It is Genetic!! A sister disease to cystic fibrosis!! You can only aquire alpha one through a gene from Mom and Dad. I rec’d a Z gene (alelle) from both mom and dad. It is one of the most destructive gene combos.

[Nat107 in reply to Maricopa]

yes it is my husband got his from his mum, his cousin was born with cf as she had both from her mum & dad, her dad being my hubby’s uncle

[Nat107]

I have 1 alpha one deficiencies but not at risk, I do have mild asthma though, yet my husband hasn’t got the alpha 1 deficiency but he was diagnosed with emphysema after a over 50’s lung scan, even though he only knew this when he looked on his medical records online, doctors never informed him of anything at all regarding this diagnosis even though they received the results over a year ago had to see it himself, he does get very breathless now and he also has asthma himself

[Ern007]

I was diagnosed with 'Mild Emphysema' over 20 years ago, I stopped smoking 24 years ago on knowing we had a daughter on the way, so helped but still plunged to moderate - Not sure what stage now as I don't have Spirometry tests anymore, as I did not have the breath - My Spirometry I think was down to smoking early, and also my mother had it..