Search results

Awesome news! Wondering if they will be at the rare genes summit? I will let you know! salt and light, imogene ChanZuckerberg= Facebook: Pricilla Chan Mark Zuckerberg

An example of your kindness! http://forums.cysticfibrosis.com/showthread.php/149228-So-confused-no-diagnosis-stop-looking There are many more! Salt and light imogene

I am arriving in LA California for the Rare Genes Summit put on later this week by Global Genes: http://cysticfibrosis.com/rare-patient-advocacy-summit/ What will I learn? I am asking as I think of our community. You are the gateway for personalized medicine. We have been together here at...

FArmFamily: Hi Semnle, I’m sorry that you are confronted with this situation/decision. This disease causes so many problems in addition to the physical. Ugh. Firstly, I want to say that I think there have been SO many excellent responses here, and I agree with the collective sentiments...

Smenle34: Just curious if anyone else has dated or is dating another person with CF? MSCali24: I know of a few people who have. There is a CF on couple on facebook that is married but I’m pretty sure they both ended up with transplants. I’m not sure how sick they were before they met each...

CFResearcher: My son has CF, not me, so I can’t say I am exactly in your shoes. I do see the pity party too, though, and I can empathize with how it must feel from your shoes. That being said, I’ve had my own journey with some other issues that I can somewhat equate it (worrying about the...

Cale Gilley: So I’ve been thinking about this a lot lately and I’m so sick of the pity I get when I tell people I have Cystic Fibrosis. I’m pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I...

Jane: My son will be 26 in April so he will no longer be covered under my insurance. He already has Mass Health as a supplement, but I’ve heard it isn’t as good for primary insurance. Can anyone recommend an insurance group for him to look into? It’s all new to us! Thanks Printer: It is my...

S.R. Hi there, First of all, please forgive me if I’ll talk nonsense. It’s the first experience for me on such forums. In addition to that, English is not my first language. Is there any harm or hazard of having a slightly higher temperature for few days? Long story. My girlfriend has...

RebJane: Looking for input; my daughter has always been a good eater. Snacks alot! Her BMI is good but I noticed a decrease in her eating(much less snacking). Her last appointment she had lost 3 pounds; BMI still good. in fact she is perfect. But; I worry about making sure she understands...

Anjanetteopal: Two of my four children have CF-like symptoms that are mild enough that the doctor was hesitant to suggest CF. However, it runs in my family and my husband and I were getting genetic testing done for other things, so we check for CFTR mutations. I have 444delA, and he has...

SweetSammiJ So yesterday 8-24-2016 I had my first sinus surgery and I was wondering who else has had it and what it was like for them. How long afterward did the bleeding last? Is there anything that helped you with the bleeding and the random nose pains RubyRoseLee responded: Hi, I have...

I placed this question regarding a possible Kalydeco induced rash a week ago on the Gene Therapy Talk forum but I thought I would try reposting here where I can reach out to a larger group of participants. I am hoping to find someone who has either experienced a rash while taking Kalydeco...

LittleLab4CF: LittleLab4CF Windex25, Bryan and all of you young CFers, I admit, this wasn’t one of my more coherent contributions. It does sound like I am shutting Bryan down and suggesting he not be looking for information and advice on alternative medicines for the treatment of CF...

From Bryan on August 26, 2016 Okay, definitely need input from others with CF on this one. Since I was diagnosed in March of this year, everyone I know has given me “advice” on treatments. Apparently Cannabis Oil can relieve chest tightness and magically make my mucus plugs go away. (I...

Does anyone have the Pari Velox neb system? I heard about it a few months ago, but not sure if it’s available in the U.S. or if anyone has used it. It uses small particles for nebulizing (similar to the Pari eFlow or Altera). I am very interested in getting one, but I haven’t been able to...

In March our 10 year old son had a positive AFB for mycobacterium avium. This culture came back smear positive and because of this being the first time mycobacterium had ever showed up in a culture for him and it was in such high quantity in the smear, our Doctor thought for sure it would...

Thanks for your patience as we combine our data and restore our forums! This have been a lot of work by Ennio and Jim and Daniel too! Thanks to all and we will be back up and running soon. Looking forward to serving you all again at full capacity! Salt and Light, Imogene

Welcome home to our old forums! Thanks Ennio! Amazing job Salt and Light, imogene

Hi My Friends, Our upgraded site is being launched within the next hours! Know that some of the most current threads are being archived and will be available soon. Feel free to repost a question. I am very excited for this upgrade to our very important conversations! Please have patience...