Help needed with info about CF

[FriendofCF]

I am putting together a video for our 15th Annual CF Valentines Gala, and was hoping to get some input from soem of you in this forum. I do not have CF, however, I am very involved with our local chapter and with various events throughout our area.

Through this video, I would like to show how things have changed from the time our Gala started in 2001 to how things are now in 2015 for patients, friends, parents, grandparents, etc.

What has changed for you in teh last 14 years that you feel an audience of 700 should know about?

Thank you in advance for helping me out. Once I complete the video, I would love to share it with all of you.

FriendofCF Forever

 

[kenna2]

Two things come to mind for me. First,I would say airway clearance. I'm 30 now but when I was younger my mom would have to (what we called it) clap me everyday. That was very time consuming and I'm sure very stressful on her arms. We CF patients couldn't do it ourselves. With the technology we have today, we now have tools like the Vibralung and Vest to do that for us. It's less time consuming and way more effective. Second, I'd say how much more empowered we CFers are because of the Salty Girls pictures that have been released all over the world. It's been an amazing self confidence boost for many of us. We've managed to raise more awareness about the disease and feel more self confident about our bodies in return. We now have a song "I Lived" by One Republic all in the past year! If that's not enough, talk about the huge breakthrough the CF community has had with Orkambi/ ...whatever the one for children is, I'm drawing a blank sorry. The CF conference is October 8th. I have heard my doctors saying they are really excited to hear about the new drugs that are going to be hopefully tested soon. More and more drugs are finally being developed for us, and that's something I think is very much worth sharing

 

[imported_Momto2]

To literally answer your question: My lung function. From doctoral student and professional athlete to someone who gets tired from a food shopping.

As for the rest, really the only new med that has actually helped me is TOBI. But I am in the minority for that.

For the majority, the Vest, Acapella, TOBI, hypertonic saline, Pulmozyme, Cayston, Kalydeco, Orkambi for some.

Most important to me personally is the CF centers finally taking infectious disease precautions, the CFF regulations for gatherings of CF folk, the increase in Great Strides Walks, more pro-active care, genetic testing, Web chat boards, elimination of CF camps.

 

[The Dot]

As a healthcare provider (not a CF patient) I see daily the enormous economical burden this disease places on the patients and their families. I do not think you can have a public event about CF and ignore this! When the current adult population of CF patients was born, they were not expected to live into their 20's, but they do - - - and their 30's and their 40's and so on, and so on! And with each new decade comes new healthcare challenges, which not only equate to an economical challenge, but make it increasingly difficult (if not impossible) for the adult CF patient to hold down a full-time job. CF patients come from the same variety of backgrounds as everybody else, so not every family is supportive. Some CFers are on their own and end up on disability. I had a patient ask me this week, "How am I supposed to live on $700/month?" Unfortunately, I did not have an answer for her. CFers cannot survive in a typical "shelter" home and this particular patient has been relying on the kindness of a fellow church member - - - who smokes! Please, bring attention to this and maybe, by the time you are making another video, there will be an answer . . .