Orphan Lung Disease ....

Following a resent infection FROM a E cigarette I stumbled across a rather GOOD BLF story about them .. It's stopped short of saying they causes infection's

Anyway Harvard have just discovered the do BUT story was about lungs immunity proteins.

So given my latest infection IT sent me on interesting quest WHY did I get a infection from E fag.

It's all to do with 30 proteins mainly 4 of the buggers " complement deficiency " that I will say is classed as a orphan lung disease.

Them cells are like first responders OR not in " complement deficiency" one way of spotting if you have complement deficiency immunity issues in my opinion is if you have spots like on my picture " scaredoasis " spots I will call them funny little things and different pigment to my skin THATs why I noticed them when my lung disease infection rate got worse.

Well I call it orphan lung disease as my doctors given my immunity issues can't seem to manage it.

This quite a lot known and talked about WITH complement deficiency and it's link to bronchiectasis even the wonder drug of Azithromycin but that is only good for some as I know to well.

Needless to say given my ongoing lung infections inflammation I will be seeing my doctor about seeing a immunity doctor given my complement deficiency and or my orphan lung disease as doctors don't seem to be managing my condition very well.

[Katinka46]

Go for it Jeff. I am all in favour of patients taking control their conditions and with orphan diseases doctors are finally coming round to the accept the fact that patients will know more about them than they do.

All the best

K xxx

[Hidden in reply to Katinka46]

I think my doctors already knew BUT I wanted to know .. All part of cost cutting I think.

Defo going to go and see what BS the come out with THE might even surprise me and just be honest or refer me to someone that will tell me.

Thanks for comment and defo agree HOW can you hold them to account if the tell you nothing.

[sassy59]

Good luck to you JAS, rooting for you. You seem to find out more than your doctors so l hope a good investigation takes place and you get the right help. Not Azith for you though!

Take care xxxx 😝

[Hidden in reply to sassy59]

Hi Sassy59 Cheers I would not mind AZI 3 days a week I don't know why my lung doctor had me on it 7 ... Must though I needed it

Doctors and the secrets eh

[Hidden]

That is very interesting Jeff and very complex. For years I have had various conditions which indicated an over active immune system. As you probably know, I have lifelong bronchiectasis. My consultant of thirty years was the only man who did any significant research into the condition. He told me that my immune system was constantly on the hunt for infection and 'going like a train' as he put it. This was caused by the nature of my bronchiectasis, not a genetic failure. Unfortunately bronch is a constant fight against infections because the damage in the lungs results in pools of fluid which attract various bacteria. This completely overwhelms any normal immune system response.

You probably know that there is a genetic condition called A1A Antitrypsin deficiency. In this case the body fails to produce the substance which coats the lungs and prevents damage from the complement proteins which rush to destroy pathogens in the lungs during an infection. These proteins also destroy lung tissue if the antitrypsin isn't present.This can lead to bronchiectasis or COPD and is very dangerous to smokers. I am not A1A Antitrypsin deficient and am one of the 33% of bronchs whose condition has no known cause. However, in recent years I have been reading about the early diptheria vaccination causing lung damage. I am the right age for this. I laughingly told my consultant and said that she might think that I am mad. To my surprise she said No, it is becoming more apparant that the early diptheria vaccination caused lung damage which led to pneumonias and the bronchiectasis. Successive governments have kept quiet about it, hoping that we would all die off. Well there are a few of us still kicking. Maybe another research project for you?

[Hidden in reply to Hidden]

Hi Stillstanding63 yer my lung doctors don't know what caused my issues BUT I do know it's not Antitrypsin deficiency.

Dieases is complex business not for faint hearted lol

But is all interesting stuff .. Have read few things on vaccines giving people cancer " one such thing was flu one " how tru the are I don't really no

But that dose not mean it don't

Thanks for reply comment