I am deeply sorry for the loss of your sister. I lost my sister to CF over 20 years ago and it is still painful. I also have CF and could use the Symdeko. I would be happy to pay you to ship it. Thank you!
Hey Rubyrose, I posted a very similar scenario to yours in a post asking about potential carrers for young CF adults. I worked as an RN in surgery for many years then went back to grad school and landed a clinical analyst job in our Analytics Division. Curious what type of work do you do within IT?
MunseythreebabiesMunsey wrote on threebabies's profile.
My daughter is 13 with CF. She is very lonely and isolated due to her illness. She would like to have a friend that also has CF. Her name is Annabelle and she can be reached on FaceTime at (606) 483-6707.
Hi! We are new to this website. I have a 9 year old son named Aiden. Doctors told us a few years ago that they thought he had CF. He’s had 3 normal sweat tests and genetic testing revealed S1235R and 7T. I noticed you also have these mutations. I’m told these are non disease causing but since he “clinically” has cf they treat him as such. We see a pulmonologist but don’t go to a cf clinic. He is colonized with pseudomonas, has a gtube do to not gaining weight, and for the last 3 years has gotten “tune ups” regularly. They have also told us we needed to exercise cf precautions at school. I’ve never been able to contact anyone with the same mutations as him so I’m excited to visit with you. Hope things are well!
I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought I’d ask your opinion. My daughter is in a constant state of some form of pancreatic pain. Docs don’t take it seriously, since her lipase is only slightly increased. Last week, after an ER visit, I read an article about slightly elevated lipase being used as a cf diagnostic tool with marginal or low sweat chloride results. I was wondering if you ever find this to be true. In chronic pancreatitis, are the enzyme levels ever crazy high? She never tests that high, but they do get elevated. She has one mutation, and the 5T/12TG variant, which ambry says are both pathogenic. Jewish says that she has cf related disease, don’t treat her for cf, but monitor her annually. How can we manage what she has going on? I see you have small duct disease, how small is your pancreatic duct? Hers is 0.5 mm. Any insight on this would be appreciated. We are in Longmont
Thanks so much for your reply. I'm just seeing this message now as I haven't logged in since Sept. I have my child's third sweat test tomorrow and am freaking out a bit. I would like to join the group, but would it show to all my friends? I feel like this is my son's info to share if/when ready. I would love to chat directly. If you ever have the time, please drop me an email at firstname.lastname@example.org.
Hi, my son was diagnosed with the same gene mutations as your kids. I’d love to talk with you about it. I don’t know much about. Just everything I’ve read in these forums. I Messaged you on Facebook. I tried searching for the page “cystic fibrosis 2789” and I couldn’t find anything.