Double Whammy

[Viking007]

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 I am a 78 widow living on a small pension. Any alpha ones on this site?

[SHAMIL336699]

Go to a reputed Homeopathic Doctor - edited by admin

[Inamoment in reply to SHAMIL336699]

Nonsense, it is just water.

[sassy59]

Welcome Viking, I’m sure there are other alpha 1 sufferers on here so see what advice they can give.

Homeopathy maybe has its place but isn’t a cure. Take care. Xxxxxx

[zorro1]

Hi Viking, I have Alpha 1 deficiency too. There are a few others on here. The only treatment (infusions to replace the missing Alpha 1) is not available in the UK. People are given inhalers to use if they have COPD and oxygen if they need it. I am not on any meds, I just try and eat well and exercise. One of the main problems with Alpha sufferers is that inflammation in the body can get out of control because of the lack of Alpha 1. Taking antioxidants or eating antioxidant rich foods may help with this. There will be a cure one day as the Alpha 1 mutation can be fixed with the new gene editing CRISPR that is being researched at the moment. Hopfully it wont be too long. In the meantime if you are in the usa you may want to try and get on a clinical trial. Good luck. 😃

[Viking007 in reply to zorro1]

So nice to know I am not alone with my alpha 1. I am limited in where I can go for treatment. I live in a small country town, no public transportation and no family near by. It is reassuring for me too have found this site, thanks for your advice,

[zorro1 in reply to Viking007]

Hi Viking, this is a lovely supportive group but I just want to make sure that you know there are some USA based Alpha groups online that can provide US specific info. Also check out the Alpha 1 Foundation - they offer advice and support to Alphas worldwide. Well worth seeking them out if you haven't already.

[hypercat54]

Hi there is no cure yet for copd. I know there are several on here who have the genetic version and hopefully they will come in soon. x

[MD2016]

Hi Viking007, I am under 50 and have been diagnosed with stage 4 Emphysema and Alpha 1 a yr and a half ago. I live in the U.S. and my Specialist actually worked with John Walsh the founder of The Alpha 1 foundation. There is hope. Always be positive!!! Wish you well.

[patmc1]

Hi, I'm a carrier of Alpha 1 (MZ) so the 15 years of smoking (I quit over 25 years ago) was 60/70% more damaging than a person with a normal gene. (I have asthma and emphysema) At first all the info said a carrier's liver is not affected (a person with both of the most "severe" gene mutation can have liver disease) but now there is some research that suggests differently .

At least for now infusions of our "missing" alpha chemical is not useful for carriers and I read often not even for those with ZZ alleles. ---You have to have our blood tested to see the levels before the chemotherapy is even recommended .

At least for now, taking care of ourselves through some meds , diet and exercise does help.

[Hidden in reply to patmc1]

I’m in USA and my hubby is alpha one allele ZZ. He opted out on the augmentation after much research. Only around 2% of the infused protein ever reaches the lungs at best. We have friends on augmentation and it doesn’t seem to be slowing their emphysema down.