Best centers for Atypical Adult Onset Diagnosis
I am a 50 year old with gradual symptoms of CF and a genetic sequencing test showing 2 extremely rare genes that could be indicative of CF, but requires further high level chromosomal sequencing by a geneticist, in addition to probably doing the sweat testing, etc. I don't have any of the main 35 mutations. I have idiopathic pancreatic insufficiency and advancing bronchiectasis.
I am in California. Can anyone give me an idea for the top centers to ask to be referred to in state or where NOT to go? Easier to do southern CA but could go anywhere. Even considering out of state via telehealth, if I can get my insurance to cover it.
I just am not sure where to go. I see that UCLA, USC, Cedars//UCSF/Stanford have centers but also places like NJH and Mayo, out of state.
Thank you!
I'm sure this is a lot to process. While I can't suggest any specifics, I am linking a few things I hope you find helpful below. I also hope other community members will chime in and share their experiences with you. In the meantime, please follow the links and see if you can get insight into providers and care centers. Please remember that our community is here for you. Don't hesitate to reach out if you need additional information or support. Sending you strength and support every step of the way. -Beth (Team Member) https://cystic-fibrosis.com/healthcare-team
https://apps.cff.org/ccd
