Search results

i was diagnosed at 35 after my children were tested. They are both carriers and I have 2 mutations and have CF. I feel so much better after over 2 years of treatment. That said I see your username is navy guy. CF will disqualify you for military service.

Has your wife been tested to see if she is a carrier, so you know if your future children could have CF? Also do you have any polymorphisms like m470v? What are your variants 5T, 6T, 7T, or 9T? You have two CF genes each of which may or may not have CF causing mutation, polymorphisms, and...

Which poly is now known to he disease causing. My daughter has been in diagnostic limbo for 11 years. She has 1 known mutation and 2 polymorphisms and 7t9t.

Have you looked at CFTR2 which is a research project run at John Hopkins. If you google CFTR2 you can see a database of genetics related to CF. in your son's case his one CFTR gene has a mutation R117H and his second CFTR gene has a 5T variant. Both of these can cause CF and based on your...

We go to CHOP and no the grass is not alwahs greener on the other side. You cannot go by the list of CF clinic pumonologists zince a dew docs see amost all the CF latjents but most or all the pulmonogists are lisged for CF clinic. If your child fits a larticular doctor's research interest...

The aqua genetic wrinkling was one of the signs that led to my CF diagnosis as an adult. As for the lungs, ears, and sinuses have you looked into Primary Ciliary Dyskinesia which is another mucus clearance disorder.

We have a pool at home that I check everyday for levels or no swimming. I just swam twice in the indoor pool at the gym and have been sick since.

I am wondering about Gluten free also. I tried gluten free and at first it seemed to work well as far as decreasing bloating and gas. Then it seemed like the more gluten free products I bought the less effective. In the end avoiding carbs seemed more important then whether or not the carbs...

Are you getting the care you want for your child without a diagnosis? Is this child getting the care outlined by the CFF? I have had a similar debate for the past year or so. I am diagnosed with CF. My daughter is genetically a carrier. Her official diagnosis is COPD Chronic Bronchitis...

I had my girls at 23 and 25 which was perfect for me. They are now 12 and 14. However, it was perfect because I had graduated from college, had an excellent job, married a wonderful man and was healthy. No age is ever right for everyone, but I can't see how a teenager will ever be ready for a...

I agree with don't disclose. Employers see cancer as either a short term problem for them because either you will be treatment a length of time or if it extends you won't be back to work. They look at CF as either you just have asthma and are making up how sick you are or you will always be too...

I was diagnosed at 35 and now I am 37. I understand because I was diagnosed after my children were tested and found to be carriers of two different CF causing mutations. All I can say is with the correct treatment I feel so much better. I am a member of a Facebook group for women with CF from...

Has your child been tested for Primary Ciliary Dyskinesia? This has similar lungs issues and even treatment to CF?

I have that at ovulation, but having naturally conceived twins twice I think my extra may be me extra fertile. Just like CF lung mucus CF cervical mucus can have infections too. My GYN tested a culture and I took antibiotics and then being on Azythromycin for lung inflamation has really...

I am 37 years old, happily married with two incredible biological children. I have two master's degrees and a job I love. I frequently travel all over the world. Having been diagnosed as an adult, knowing I have CF gives me a different perspective on things. Now I cherish the small things...

I am 37 years old and I told my doctor I planned to live to 90. I am married, have two wonderful children, two master's degrees, a job I love, and I enjoy traveling the world. Knowing your child has CF at such an early age means your child will benefit from the latest research and proactive...

Congrats on the baby. Make sure a sweat test is done at an accredited hospital. To check accreditation go to www.cff.org. Yes, I was diagnosed at 35 and now I'm 37. I was diagnosed because my daughters were being tested due to their chronic asthma not be helped by asthma medicine among other...

I sent you a private message.

Since I wasn't diagnosed with CF until after I had kids I think my perspective and my health may be different from other CF mom's, but I think after diagnosis I am now a better mom. I truely enjoy the little things each day. I take more time to listen to my kids now. I make sure I make them...

Thanks everyone Im trying the 250mg daily. If nothing else consistency will probably help.