Search results

Stay out until you feel comfortable to go back.

Call your Patient Support Specialist. I did and she said that nobody reported eye issues.

I have 2 cataracts but my eyes burn.

My mutations are Delta F08 and V562i with Variants 5T & 12T. I am 79 years of age. If she has not a COMPLETE CYSTIC FIBROSIS SEQUENCING, I would suggest that you request this of her CF Specialist.

I am 79 years old with CF. I was dx at age 47. I won't waste your time, I believe that you could have CF. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. If you live in the US, go to the following link for a clinic in your area. cff.org.

My understanding is different. There are almost 2000 known mutations. New born screens for the most common 32. As you need additional screenings, your insurance will first allow 250 then 500, etc. until you /they have completed. It is all about Insurance Company money.

Newborn screening in most states is for ONLY 32 mutations. There are almost 2000 mutations (all on the same gene). You need an appointment at an APPOVED CYSTIC FIBROSIS CLINIC with a CF SPECIALIST.

Meggy, It is one thing to go to an approved CF Clinic but you also need to see a CF specialist at that clinic. For example, Massachusetts General Hospital has more than 3000 Doctors but less than 10 are CF Specialists.

Go to a CF CLINIC!!!!

If and when you have a problem, contact legal at cff.org

Yes, I use Advantage. I have a plan (expensive) that pays all of my co-pays for Medicare A & B. I have been averaging 3 hospitalizations per year and the Advantage plan pays everything that Medicare doesn't pay. Over the year I save thousands of dollars.

You will adjust to CF and the new meds. I was dx at age 47, in January I will be 79.

You are showing more than enough symptoms to justify further screening. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST. I was 47 when I was diagnosed. Even if you were screened, as an infant, they would have only screened for 32 mutations. There are...

During the Open Enrollment period, call the company that you have selected and sign up. They will do the rest.

During the open enrollment period, call the company that you have selected. Sign up. They will do the rest.

You are not alone, there are many of us older CF patients. There is a woman in Calif who was dx in her late 80s and is now 94. I was dx at age 47. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. Only there will your mutations get the proper treatment and where...

It certainly seems like something that needs to be checked out. Her Doctor suspects CF but what is he/her doing to find a proper Dx. Your daughter needs to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST.

I would have him retested but only at an APPROVED CF CLINIC by a CF SPECIALIST.

God bless you Ken. You are a trailblazer

Ken: I'm so very glad that you are doing well. Bill