New Diagnosis, need help finding a treatment center

[Tbritt]

Hello,
I am a 40 yr old female known carrier of the CF gene mutation. Two years ago my pancreas failed and I have been enzyme dependent ever since, with worsening symptoms. My liver is now " moderately " damaged (by fatty liver disease) and I have been unable to find a physician who knows anything about this disease. Do you know of any physicians or treatment centers for adults with CFTR-related Metabolic Syndrome? Also, two of my three daughters are displaying components of the disease, one with the respiratory part and one with the GI/pancreas ailments. Only one has had a sweat chloride test (borderline) and the other had her mutation partially sequenced but I was told it was a rare mutation, so they were unable to finish sequencing her DNA. They also are not currently linked with a CF specialist, can you recommend any CF centers for them?
Thank you for your time!

 

[2005CFmom]

What state do you live in? What major city is near you?

http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

You can go to the above link for the Cystic Fibrosis Care Center Network and find the centers closest to you.

 

[Tbritt]

I'm sorry I forgot to mention...I live on the West Coast, Fresno Ca, about three hours from San Francisco and LA. My middle daughter is an established patient at Lucille Packard (Stanford) due to a tethered spinal cord. We do have a Children's Hospital near us but they only have one specialist in CF. Still, I thought I would start there for the girls. They are both frequent patients there, and this hospital has done all of their testing. But they seem to be having trouble diagnosing our gene mutation, they really deal mostly with regular pediatric CF, not CRMS.

 

[2005CFmom]

Stanford University Medical Center

Stanford University (ADULT) Palo Alto, CA 94305 Appointments: (650) 723-6381 Director(s): Paul Mohabir, M.D.

Stanford University Medical Center (PEDIATRIC) Palo Alto, CA 94304 Appointments: (650) 497-8845 Director(s): Carlos E. Milla, M.D., Richard Moss, M.D.

Here is the information on one of the centers. You can check the link above and you can see others, but I copied this one since you said that your daughter already goes to Stanford for care. And also because I have heard Dr. Milla is a highly regarded doctor for CF care. I would think that they have an excellent adult center as well. Since they are a larger center they are likely more familiar with CRMS.

 

[Beccamom]

I sent you a private message.