I have an online friend who got asthma with alpha1 antitrypsin deficiency. At her last blog entry she talks about what it really feels like having asthma with alpa1 and peoples habits and likes. It was so good explained that I asked her to allow me to post it here on my blog, and she was kind enough to allow it. So here my dear reader you can find out how it is to live with asthma with an alpha1 deficiency in additon. From my side: Having a “normal asthma” is just like that just except for the burning sensation and the dying lung. But even a person with an “ordianary asthma” can get damages to the lungs when exposed to stuff they get sick from, the lungs get hardened, and the illnesses symtomes can develop to become 24/7. It is therefore very important to any asthmatic – alpha1 or not – to avoid any what makes the asthmatic ill. Happy reading, and hopefully listening. – Annelie
How it really feels – by Karen Skålvoll
“It is certainly very difficult for those who are healthy to understand that we who are living with a serious lung disease react to fragrances others have chosen to take on. The fact that it burns the lungs, the mucus, painful spasms in the bronchi and is really just child’s play, because us with alpha 1, we get lung damage as well. Sometimes I am willing to pay the price to visit some of the world, but mostly I let it be. I stay home. Putting an injection of medicine to open to breathe is no fun, the heart races away with a pulse that is sky high and it is physically difficult to hold a glass, not talking about holding a pen or write.
When it comes to those with alpha 1 lacking the protein (alpha 1 antitrypsin) it is the alpha1 antitrypsin that protects the lungs, and we do not have that. This means that everything we breathe damages lung tissue much more than those who do not have this gene defect. A bit like in children who have not yet fully developed lung tissue (that you can read about here: children’s health in front of the staff’s vanity, indoor air quality, children and allergies) I have severe uncontrolled asthma on top of my Alpha 1 can be on any given day loss of life in an asthma attack because others have chosen to dress up. Arguments like, “I used just a little” or “only little won’t hurt anyone” or “it’s just soooo little..” or “I can not help it..” provoke sometimes even though I have gotten extremely hard bones in my nose eventually. The vanity of others will go in front of other people’s health, I think is directly frightening. Let everyone breathing fresh air that does not bathe in perfume, it is the best for children, allergy sufferers, those with lung diseases and, not least for most people.
Since I have alpha 1 I also feel on the psychological element in this. My lungs are damaged and get damaged more because of all those who smear themselves and spray themselves with so much, if I get an asthma attack I am simply promoted one step closer to death. It’s a brutal reality that is not spoken about. To smoke or use spray in one form or another close to some of alpha 1 is considered an abuse, because we get lung damage of the sort. The more we tell, the more we talk about this the more knowledge comes out of the public. I hope that future generations will not have to hear all the prattling that those who talk about freedom of perfume are selfish, they can only wear masks, they can stay home, etc. No, the only thing that counts is the information we need to be visible and we must have the courage to talk about the unpleasant consequences of others’ decorating.” – Karen Skålvoll
“He who Rejects change is the architect of decay. The only human institution Which Rejects progress in is the cemetary.” – Harold Wilson
Thank you for sharing Karen and for beautifully explaining to us all.
Don’t you know what astma is? Read about asthma and what it is..