Thursday, March 14, 2013

CF Can Be A Lonely Disease

When we were first learning about cystic fibrosis after E was diagnosed, a lot of people asked us if there were support groups where other parents of kids with CF could get together and talk, share stories and resources, etc.  It might be nice for E to have a friend one day who could relate to what she is going through.  Someone who has to do the same treatments and take the same types of medicine and someone who understands how she feels.

However, there are risks involved when two people with CF are in the same room.  There is a risk of one person with CF spreading destructive germs to another person with CF that can lead to severe or worsening lung disease.  Bacteria such as pseudomonas aeruginosa (pseudomonas) and Burkholderia cepacia (B. cepacia) are resistant to many antibiotics which makes them difficult to treat.

The Cystic Fibrosis Foundation released these new changes to their infection prevention and control policy today:

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

The key elements of the Foundation’s new policy are:
  • At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  • At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  • Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices. 
Just another reminder of how cautious we have to be about germs, not just at these events, but everywhere we go.  And another reminder about how socially isolating this rare disease can be.  

I feel badly for adults with CF that cannot attend some of the fundraising or advocacy events that they used to.  And I hate that we can't get together with other CF families and let our kids play together.  But I'm grateful for all of the people I have "met" over the past few months either through facebook, blogs, or online forums.  I'm glad we have a way to connect and ask questions and to support each other when we need it.  And I hope as E grows up she will have friends who take the time to really understand what she is going through so that she will have the support she needs as well.


  1. Hi, I'm a nursing student and have been reading your blog about Emery. I just wanted to say that my best friend had CF, and I truly believe that Emery will find friends who will be supportive of her and love her. My best friend was one of two people in my high school who had CF, and our whole school was very supportive of her. She was my best friend from the time I was 2 years old. I have faith that Emery will find some wonderful friends as she grows up, and I wish you the best in your treatments with her! You and your family are a great support system :) Love, Laura