Search results

Hi Jeana Lynn, Sorry to hear that you’re having to deal with hemoptysis. Things have calmed down for me since starting Kalydeco, but I struggled with it for years. I did have a bronchial embolization done years ago because the episodes were increasing in frequency and it was the hope that the...

Sarah- tagging you on this message from dwiltse: Sarah, I have DF508 and S1159P. I would be very interested in connecting, especially regarding whether ivacaftor was an option for your daughter. I believe you referenced this in a different post. Thanks, Dave...

Dwiltse- I don’t know how often Sarah is on here and she won’t be notified of your message because she rejoined the forum as a new member when the forums were being updated. I’m going to re-post the most recent thread she posted so that she can be notified...

Very interesting article about the survival gap between US and Canadian CF patients. http://www.cnn.com/2017/03/13/health/cystic-fibrosis-canada-vs-us-survival-study/

CFF sponsoring Webinar on Health Care Reform today. This Thursday, March 16 from 10:00 – 11:00 a.m. EST, the CF Foundation Public Policy department will host a special webinar update on health care reform. Please click here to register for this webinar. After registering, you will receive a...

I imagine you’re feeling overwhelmed. It’s a lot to process. I’d push for an appointment before June, if for no other reason than for your mental state. Waiting 3 months to speak to a specialist after being blindsided with this diagnosis is too long! Make sure your appointment is at a CFF...

Amber, Thanks so much for sharing your inspirational story. I was having a “bad” day. But then I read your post and it made me smile and put things back into perspective for me. Congratulations and Best Wishes for many more happy years ahead.

I’m sorry you still don’t have answers. Who ordered the genetic test- your pediatrician or the doctor at the CF clinic? I would ask for a copy of the test results. Make sure they did a comprehensive screening. Ambry is one of the labs that does the testing and their website does a good job at...

I found this on the CFF website. I thought it might help: https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Lung-Transplantation/Getting-on-the-List/Planning-to-Pay-for-a-Transplant/...

Sorry- those links didn't work. Here's the info: CFTR-Related Disorders Definition: 1 or more characteristic phenotypic features OR History of CF in a sibling Plus Detection of 0 to 1 CF-causing mutations after sequencing and deletion/duplication analysis Plus Intermediate sweat test (30-59...

I wasn't sure, so I just looked it up. It's confusing because there are 2 disorders: CFTR-related metabolic syndrome and CFTR-related disorders These charts explain the differences: cntped1014_Feature1-T2.jpg cntped1014_Feature1-T3.jpg

Hi Jenn, I’m sorry you’re going through this. It so hard not to have answers and to be frightened of what an answer may find. Hopefully, the genetic testing will clarify things for you. Make sure that a comprehensive genetic test was done and not one that just checked for common mutations...

These are some of the issues I think need to be addressed regarding pharma and patient involvement. All of these observations are based on my interactions/or attempted interactions with Vertex and contact with the FDA. I’m guessing Vertex isn't involved in this project you mention. This is a...

Sarah- I don't think this would be as relevant to your daughter since she isn't colonized with bacteria, but it's an interesting summary of an article that helps to answer "If Ivacaftor works, what does it actually mean?" It gives you an idea of the long-term clinical implications of Kalydeco...

Hi Autumn, I’m not sure of the answer to your question, but I think the CF Legal Hotline or CFF Compass may be able to help. CF Legal Hotline: 1-800-622-0385 CFF Compass: 844-COMPASS (844-266-7277)...

Thanks for all the tips. Thought I'd share a CFF blog post that gives some great ideas for organizing CF stuff in general: https://www.cff.org/CF-Community-Blog/Posts/2017/6-Tips-for-Staying-Organized-With-CF/

How frustrated you must feel! I remember how disappointed you were when the 661 study fell through for her and now this. It's so difficult when we get our hopes up about somethong only to have them dashed. I think the reason for the IUD is because VX-440 was associated with teratogenicity...

I'm sure many have seen this already. But for those who didn't, meet Sammy, an adorable 2 year old with CF, who is helping to raise awareness for CF with her bottle flipping skills. :) Thank you to the Ellen Show for creating a platform to raise awareness of CF and for the $10,000 donation to...

Thought I’d give an update--As expected, prior authorization was rejected since I’m receiving Kalydeco off-label. My doctor wrote a letter of appeal and I received notification today that denial was overturned and Kalydeco was approved until July. I guess the whole process has to happen again...

Being the research nerd that I am, I’m set up with google scholar and get alerts when CF articles are published. I just received notification tonight of this article. http://onlinelibrary.wiley.com/doi/10.1002/ppul.23659/full Sarah, I’m wondering if your daughter is one of the 7 patients...