Monday, June 17, 2013

Cystic Fibrosis and Transplants

Read the following article on the link below, but for goodness sake don't take it seriously.

I’m often incensed by things I read online and I’ll have a moan to myself and then get on with my life. This article has enraged me. It is one of the most offensive articles I have ever read regarding Cf. Not only is it offensive to those who deal with Cf every day, it is condescending, ill informed, factually incorrect and a potentially damaging article. To the memory of people with Cf who have died then this article is sickening and upsetting. If this sounds dramatic to the average reader then read the comments following the article and you will see that my feelings on this are not unique. 

This is my reply to this woman, I forget to say however that not all people with cystic fibrosis opt to go down the transplant route. Excuse any mistakes I'm terrible and correcting my own stuff. I become blind to it:

Cystic Fibrosis is genetic. People are not GENERALLY born with it they ARE born with it. You’d think that in writing something so inflammatory then you’d at least get your basic facts correct. This article makes it sound like people with Cystic Fibrosis (pwcf) choose to have a transplant because they can’t be bothered to try anything else. Let me tell you, once someone with Cf is at the stage where they ‘choose’ to have a transplant the lungs are damaged beyond repair. There is no going back. Even if you aren’t at the transplant stage then the methods of oregano oil, lobelia and eucalyptus will not stop Cf causing havoc in the body. If you think (yes you Stasia Bliss) that oregano oil and yoga is a decent and effective alternative to a transplant then I suggest you suffer from an extreme form of aggressive and debilitating ignorance that no amount of herb will treat. I’m sorry about that. Maybe try rubbing extra strong chilli oil into your eyes. This needs to be done six times a day to have a cumulative effect. Obviously check with a practitioner first.

Another fact you need to get right Stasia is that Cf will NOT find its way into newly transplanted lungs. I suspect you’ve taken too many potions that have addled your research brain. A lesson for us all I think.

The article is detrimental and damaging to those who campaign for Cf awareness and transplant awareness. If someone came up to me and suggested that herbs and yoga would help my current lung function rather than all the effort I put in myself then I could not be held responsible for my actions.  

Yoga may give someone a calming effect on the mind but it is not and never will be a curative for someone who needs a transplant or otherwise. Like I said earlier the lungs are irreversibly damaged. How do you suggest that yoga self heals damaged lungs? Is magic involved? Wow, that would be good. How would you expect a person with twenty percent lung function or lower to do yoga? It can be hard enough work getting your socks on in the morning with lung function higher than that. You’ve no idea have you. That wasn’t a question. It was a statement.

One of my favourites in all this Stasia is your suggestion of lobelia to induce vomiting (sometimes violently) in order to get rid of the mucous in the lungs. Have you actually read this back? On the most basic level since when does violently vomiting help get rid of anything from the lungs? I assume you did not do biology at school. In any case violently vomiting for 7-8 hours is not good for anybody. Remember you said all this can help rather than choosing a transplant. I don’t know where to start. I hope to god that someone who is desperate for help does not read this pathetic excuse for ‘advice’ and try this method. I suggest Stasia that you take lobelia yourself and vomit for 7-8 hours and then see how tired and strained you would feel. I’m not quite at transplant stage and if I vomit for two minutes I feel exhausted and breathless. What you are suggesting is at best stupid and dangerous. Keep going with that chilli oil. Keep checking with your practitioner. Whilst there, get your bowels checked because you are obviously full of something. Try Senokot. You’ll need to quadruple the dose.

Now on to emotional well-being. You can’t heal CF with emotional well-being. If you could heal Cf through well being and happiness then I’d be running around right now. Unfortunately I didn’t smile enough the other week and got myself a pneumothorax. My bad. It’s my mistake for my ‘thick belief that life won’t work’ for me. I’ll tell that to my fifteen year old son and husband. They’ll be so cheesed off that some of my health issues are down to an emotional state. How rude and misinformed can one person be? Have you any idea how offensive you are? Would you tell someone with depression to snap out of it? I dare say you would. Did I mention the chilli oil and eyes? Keep going.

It is suggested in the final paragraph and I quote ‘Serious and even ‘incurable’ diseases have been treated with natural medicine with great success, even in the final hours.’ Words fail me. Have you ever seen a person with Cf in their final hours? Respiratory death is rarely peaceful and your suggestion that natural medicine may save someone with Cf in their final hours is one of the most insulting things I have ever read. It makes me feel sick that someone can be so misinformed and think it fine to write such trash and then have the audacity to say ‘Just so long as misinformation and ignorance do not contribute to a choice that can not be reversed.’ Absolutely unbelievable. All your suggestions are misinformed, every single one of them. You clearly have little or no common sense. I feel sorry that you hold such ridiculous notions. I’m even more sorry that this article was ever allowed to be published. It should be retracted with a full apology. 


  1. Thank you! I read that article and couldn't put into words how angry I was so reading this has helped!

  2. Thank you! I read that article and couldn't put into words how angry I was so reading this has helped!