Some of the topics covered were:
1) Self-hypnosis for patients with CF , Ran Anbar is the physician that gave an informative presentation also provided an opportunity to attend a workshop and learn the basics. I found this beneficial for my daughter because its not like hypnosis you see on TV. Its more about using your mind to help keep you calm. You can visualize a favorite place, activity, make up your own special place in your mind and then during procedures (blood draws, procedures, x-rays, etc.) you can distract yourself from whats going on. My daughter is only 3, but I will probably start telling her stories and help her relax while waiting for dr. visits and procedures. I was not able to attend the workshop because it was limited on space, but I learned a lot from the formal presentation and a handout he distributed.
2) Unfortunately, if missed the first part of the Keynote Speaker presentation, Dr. Pamela Davis spook on Cystic Fibrosis Research: Whats New? Whats Next? I did hear her talk on some of the research underway. Researchers are working on three different approaches to stimulate (possibly replace) the abnormal gene and protein. The first approach is to correct the ion transport abnormalities, the second is to activate the stop genes (some mutation of the CF genes create a stop in the sequence) the third is to insert a normal copy of a CF gene into appropriate cells (viral approach to inserting the corrected gene has not be very successful) non-viral gene transfer seems nontoxic and safe but needs a lot more time and research.
3) I didnt know anything about the use of Hypertonic Saline and Dr. Milene Saavedra did an excellent job at showing how effective this has been at thinning the mucus in the lungs. This treatment does not work for everyone so you need to discuss the use of this treatment with your physician. She did say that at about 3 months they know if the treatment is effective. There are different dosages so that has to be evaluated by your physician.
4) A presentation by Dr. Juile Desch discussed the importance of exercise and that not only exercise but over all well being is important those with CF and to everyones health in general. Dr. Desch has CF and has been very healthy and attributes her health to regular exercise (aerobics and weight training).
5) There was a panel of 5 young adults that were will to discuss their lives and were open to people asking questions on how they have handled different aspects of their life in relation to CF. It was great to see the young adults doing well, happy and living fairly normal lives.
6) Honor Page: A mother of a daughter with CF is involved with her clinic and is working to help improve the quality of care within her clinic. I found a lot of the things they are doing in their clinic is really good and would be beneficial if other clinics can adopt some of their procedures. She discussed how the parents and patients worked closely with the CF clinic staff to make changes and improve communication between patient/parent and staff. She also indicated that some of the successes for their clinic is a print out summary at the conclusion of all visits so when you go home you can remember what the height, weight, and items discussed at the visit. The have a parent to parent network, they have individual schedules for when patients are in the hospital (this allows the patient and family to know around what time procedures will occur, doctor visits, when a tutor from the school should come etc.) They in-hospital procedures for nebulizers, CFRD screening, flu shots, respiratory exercise, and a pre-visit questionnaire that they mail out a few weeks before the clinic visit so patients/parents can jot down questions and ideas and mail it back. Then the staff can have information on hand prior to the visit and you dont forget to ask your questions.
7) Dr. Mitchell Drumm disucess CF Genes: Why they Matter and he illustrated the work being done at address various genes and how they interact. The data is trying to correlate the various genes and why some with the same gene mutations due better than others with the same mutations. Some genes involved with inflammation and other genes that may be related to asthma might be important to providing better care and medicine for CF patients.
This is just a touch of what was covered. In addition to the presentations listed above, there were a handful more. This also doesnt address the information I received while talking with others. I learned about MAC, medications, how often children are cultured in other areas of the country, and just had a nice time meeting other parents. Im not an expert on all that was presented. I do encourage people to purchase the VHS or DVD and see some of the presentations. Jana
