Wednesday, August 1, 2012

Lack Of Knowledge In PWCF

The lack of knowledge by people who actually have CF is astounding. 
At night while I can't sleep, I listen to podcasts of either Joe Duffy, Colm Hayes or Adrian Kennedy. Last night it was Joe Duffy. 
While it was a time for happiness, my happiness turned into anger when I heard Jillian McNulty, who campaigns for CF, talking about the new unit in Vincent's Hospital. So by putting 1 + 1 together, one would think she would know what CF is. However, this quote  "our immune system is supressed, so we are more susceptible", really annoyed me. 
NO WE DON'T have a suppressed immunity. We aren't born with a lowered immune system. Like I said on my Facebook yesterday. By saying people who have CF have a low immune system, then taking my own situation into account, I work with the public, in a small room, I exercise loads which lowers the immune system, I should be riddled with infections, coughs cold, and sore throats. 
The only way that we could catch infections or cold is that IF mucus stays in the lungs, then the infection can set in. Therefore, one would have to have mucus in the lungs. It does not mean the immune system is lowered, it just means the mucus is a breathing ground for infection. Lastly, if we did have a problem with the immune system, then we would have a low white blood cell count. Which we don't.

This isn't an attack on Jillian. I'm just putting it out there that people need to know what actually happens with CF. People ask me so many times "what is CF". Ireland has the biggest amount of people with CF per capita in the world yet Ireland lacks a huge amount of knowledge, and this seems to include the people who have CF. 


  1. Weird, to say the least. Maybe she was getting confused with post transplant PWCF who are imunnosuppressed?

    I think people with CF who get very underweight and poorly (i.e. end stage CF) will have a weakened immune system, but it is basically wrong what she said.

  2. I think anyone in their final stages would have a low immunity. I don't understand why she said it, when it's clearly not right. The general public also think we have a low immunity. Very annoying.

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