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July 24, 2002

Community Resources

Question from Aztec, New Mexico, USA:

I am a 38 year old male with cystic fibrosis who was recently diagnosed with CFRD (cystic fibrosis related diabetes). Can you give me any contact information this subject close to where I live? The only contact I have now is 180 miles away, and there isn't much about CFRD on the web.


It is not quite clear whether you are simply looking for more information on CFRD, in which case proximity is not really important or whether you need actual clinical support. If it is the former you will find quite a lot of reports by searching PubMed under Cystic Fibrosis Related Diabetes, and you could supplement this by a visit to the medical school library in Albuquerque. For someone living near the Four Corners area, one device that you might find of great help in both keeping in touch with your diabetes care team and significantly reducing the need for clinic visits, is the Acculink Modem which has been shown to be especially helpful to those who live some distance from a Center.

Additional comments from Dr. David Schwartz:

I’d suggest that you contact your local Cystic Fibrosis Foundation chapter and/or the American Diabetes Association to inquire.

Patient confidentiality issues will likely prevent organizations and doctor’s offices from providing specific names, but such organizations, especially a University based CF clinic and/or diabetes clinic may have a family-driven support group set up.

In South Carolina, there is a non-profit organization called “Family Connections” whose mission it is, in part, to help families with various medical conditions “connect” with one another. Perhaps this organization knows of a similar organization in New Mexico.

Additional comments from Shirley Goodman, diabetes nurse specialist:

I am uncertain if this will answer any of this individual’s questions, but the Cystic Fibrosis Foundation has an excellent book for the lay person on CFRD written by Dr. Hardin from the University of Utah [Ed: The title is Managing Cystic Fibrosis Related Diabetes (CFRD): An Instruction Guide For Patients & Families, Dana S. Hardin, M.D., Carol Brunzell, R.D., C.D.E., Kathleen Schissel, R.D., Terri Schindler, R.D., M.S., Antoinette Moran, M.D., Published by the Cystic Fibrosis Foundation, Bethesda, MD 20814, � 1999, 72 pages. To obtain a copy of this free guide, contact your local Cystic Fibrosis Center or the Cystic Fibrosis Foundation at (800) FIGHT CF. See CFRI News, page 6, for a review]. Perhaps Dr. Hardin, or one of the other authors, would have contact information for this individual closer to home.