Cystic Fibrosis

Why can’t people with Cystic Fibrosis meet face to face?

One of the things that people are most surprised at when they find out about Joe having Cystic Fibrosis is the fact that it is dangerous for him to be in contact with other people who have CF.

We were obviously told about it when Joe got his diagnosis from the heel prick test and we were told that it is because of cross contamination of bacteria and infections- people with CF are susceptible to pick up nasty infections from each other that don’t affect people without Cystic Fibrosis in the same way.

This is something that we have always lived with and accepted but it wasn’t until the 1990’s that this was the case.

It was common practice in the 1980’s that people with CF would share wards, have social gatherings and even go on organised camping holidays together to give each other support and to keep spirits high.

It understandably was a big shock and disappointment to the CF community when it was discovered that meeting up and being in close contact with others who have Cystic Fibrosis was actually doing great harm.

It all came about because of a discovery by a man named Dr Lipuma.

(JOHN J. LIPUMA M.D.Research Professor of Pediatrics and Communicable Diseases)

He discovered, using genotyping, that a bacteria called Burkholderia cepacia that was spreading quickly among Cystic Fibrosis patients in the 1980’s, was actually spread by person to person contact. It was previously quoted by the federal centre for disease control and prevention that it was “not spread person to person” despite evidence to the contrary. Some hospitals had over 20% infection rates amongst patients.

As an article in the The Pittsburgh post gazette states:

(Dr Lipuma’s) 1990 paper on how the infection was spreading from patient to patient quickly resulted in new infection controls among cystic fibrosis patients with one main rule:

Cystic fibrosis patients could not come in contact with one another.”

And that is why infection controls enforce that people with Cystic Fibrosis do not come into close or prolonged contact with each other.

This is why when Joe goes to his CF clinic at hospital he is put in a room away from others straight away, why when he is in hospital having treatment or I.V’s he is put in his own room rather than on a ward and it is also why he is not allowed to attend a school or nursery that has another pupil in the same year group and ideally the same school that also has CF.

It is also ONE of the reasons why you have genetic counselling. It is to make you aware of the possible risks of cross contamination when you have two children with CF- it is obviously a very personal and private choice that parents make regarding the decision to have more children, and there is no right or wrong answer, but there are cross contamination dangers if you have two children with the disease and precautions are suggested such as having separate bedrooms and separate rooms to do treatments in.

Despite Dr Lipuma becoming very unpopular with the CF community for some time after infection controls came in, the results have been very positive, the Pittsburgh Gazette states ;

But as quickly as the cepacia infection rates had risen among patients, new cases declined once patients were prevented from contacting each other. Today the infection rate is less than 3 percent among the country’s 30,000 cystic fibrosis patients.

‘It has really been an impressive change,’ Dr. LiPuma says.”

You can read the whole of the Pittsburgh gazette article here.

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4 thoughts on “Why can’t people with Cystic Fibrosis meet face to face?”

  1. This is why Facebook groups for cf and blogs are really important to the cf communities so we don’t feel alone and isolated. One of my closest friends is a cf mummy I have never met, she helped me a lot through my journey with órla as she had experienced the death of her son with cf a mere two months before.

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