Why Do You Need to Come to the CF Conference this August?

Summer 1998

Why do some people with CF do so very well? What are they doing right? These issues will be discussed at our upcoming CF Conference on August 7 – 9, 1998 in Palo Alto, California. It has been documented that many people with cystic fibrosis know a great deal about their disease and take very good care of themselves. Other people with CF may not have the resources or necessary information to take the best possible care of themselves and consequently their health may suffer, and that is one reason why we organize a CF Conference each year. Those who know how to take good care of themselves will not only feel better in the present, but they will benefit further as new controls for cystic fibrosis become available. Margaret DeLano, M.D., CFRI Medical Advisor and RAC Chair as well as Richard Moss, M.D., Director of the CF Treatment Center at Packard Children’s Hospital at Stanford, both agree that the degree to which CF patients take care of themselves determines how well they do. Dr. DeLano states, "How well a patient does is 10% genetic and 90% environmental." Despite the small descrepancy on their percentages, the message from these CF specialists is clear and it means good news for CF patients.

Genes received from parents determine each person’s genetic makeup. Environmental factors include a clear understanding of cystic fibrosis, quality medical care, compliance with daily health routines and medicines, positive attitudes and helpful outlets for emotions, comprehensive insurance benefits, individualized healthful nutrition, successful strategies for coping with the disease and knowledge about state-of-the-art CF interventions. While faulty genes cannot yet be altered, environmental influences can be constantly assessed and improved.

People with CF have different regimens that have been specifically prescribed by their physicians and care-providers. Do these regimens represent the best in CF medicine? Do other CF doctors consider the treatments that your doctor is recommending to be the best? Come to the CF Conference and find out. Also meet with and discuss treatments with other CF patients. Knowledge and self-management are the key to every CF patients’ current and future health, and ultimately their survival. And finally, look also at our feature article on summer health in this issue that discusses various health regimens of people with cystic fibrosis.

To further enhance the quality and scope of information provided, we are sponsoring this conference jointly with another CF organization, the United States Adult Cystic Fibrosis Association (USACFA). We are greatly strengthened every time we share our ideas, not only with each other, but also with any other group that supports people with CF and their families. Our joint conferences have brought in speakers and attendees from all over the world. We have learned of the varying methods of CF treatment, and the startling differences in life expectancies the world over from these experts. With this information we gain choices, flexibility, friendships, a greater sense of community and ultimately, a higher quality of life. We don’t tell people what to do; we equip them with information to make their own choices. How can anyone choose to miss this conference?

See you at the CF Conference in August!

Sincerely,

Ann Robinson

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