Infection Control and CF

Cystic Fibrosis Canada along with the the Cystic Fibrosis Foundation (USA) recently brought out a new infection prevention and control policy. While I don't know what the old policy entailed, here are a few excerpts from the new policy:

• People with CF may attend Cystic Fibrosis Canada hosted or sponsored outdoor events but are advised to maintain a distance of at least six feet from other individuals with CF at all times. 

• The organizer(s) of Cystic Fibrosis Canada hosted or sponsored outdoor events may assist with voluntary self-disclosure through the provision of items such as clothing apparel, stickers or wristbands.

• Avoid activities associated with events that encourage crowding.

• Always be aware that there may be other people with CF present at the event, including those with B. cepacia, epidemic Pseudomonas, MRSA and other potentially harmful infections.

• Be aware that young children with cystic fibrosis are usually less vigilant about observing proper infection prevention control practices.

• Only one person with CF may be invited to attend a Cystic Fibrosis Canada hosted or sponsored indoor event or meeting. In the case where a person with CF has been selected or invited to attend a Cystic Fibrosis Canada hosted or sponsored indoor event or meeting, the organizer(s) shall make every reasonable effort to ensure no other persons with CF attend that indoor event or meeting.

Basically: Avoid each other at all cost and beware of the children!

While I understand that the infection control people are just doing their job, is it really necessary that only one person with CF can attend an indoor event? Even with outdoor events like the Great Strides Walk which seems like the perfect place to meet other people with CF, the 6ft rule means unless there is screaming involved, conversations between people with CF would be at a minimum.

I know that it is the job of the infection control people to reduce cross infection and the best way to do that is to isolate the cause of the infection, ie people. They are the ones who get yelled at if I go to a CF sponsered event and catch a weird germ. However, the policy and the constant need to live in fear seems incredibly isolating for people with CF.

How are you suppose to meet other people or families affected by CF if you aren't allowed to approach anyone or attend indoor events? I'm sure a lot of people break those guidelines with friends they already have but if you want to meet anyone new, the only real option available seems to be the Internet with its facebook, blogs, or CF websites.

However, while I'm sure those help some people find connections but personally, it's hard to find any that are actively used and those that are seem to be quickly taken over by people who want to promote their latest 'cure' or annoying people who post that their lung function is so high because of their positive attitude and everyone needs to be more positive (I wish I was kiddening...apparently I've been following the wrong treatment plan this whole time with my puffers and medication). 

Although to be honest, I've probably never given it a fair shot as growing up I've didn't have to look very far to find someone else with CF as Amy's bedroom was across the hall from mine. Having Amy around helped normalize the experience for me growing up as I wasn't the only one doing aerosol masks every day or taking pills every meal.

It helped growing up to be able to rant about a situation and have the other person know exactly what you mean. Sure, other people can sympathize but unless you have CF, it's hard to fully understand the frustrations of endless coughing fits, being exhausted from those coughing fits, struggling to breath deeply, having an obsure type of diabetes that no one understands, or having a million digestive problems.



Reading the new policy made me realize how without knowing it, having Amy to talk to has been invaluable in my life. I've never realized before how comforting it is to have a sister with CF until I thought what it would be like to not have anyone to call about a weird lung pain that is bothersome but enough to have to go to the hospital, or to rant about the gross-ness of Boost, or to ask how many pills she takes with a smoothie.

I think I would feel isolated if I didn't have Amy to text at all hours about all my problems as it would be hard to have these experiences and not be able to talk to anyone who 100% understands. The new guidelines, while trying to ensure that everyone leaves an event with only the same germs with which they arrived, will make it even harder for those with CF who want to make connections with other people with CF.