At our annual Educational Conference this year, it was more apparent than ever that a
cure for cystic fibrosis may be further off than we had originally anticipated when gene
therapy was first introduced. (Please refer to the articles on conference talks by Barbara
Palys, Eric Heilman, Dr. Richard Moss and Dr. Robert Stern in this newsletter.) While this
may at first sound distressing, the message at the conference was one of realistic hope. I
say realistic hope, because controlling the symptoms of cystic fibrosis has become our key
to slowing the progression of the disease while we continue to search frantically for a
cure. And developments in control are continuing at an encouraging rate.
With these controls come a higher quality of life and better survival rates for all who struggle with cystic fibrosis. But this exciting privilege has a responsibility. We cannot insist on trying out new strategies for controlling CF if we and our doctors do not know what they are. It is now more important than ever to take on the responsibility for educating ourselves. The state of medical care in our country cannot (and will not) support the discussion of obscure or experimental techniques with us. We must be prepared to educate our physicians regarding these new techniques and insist that they be employed.
It is no easy task taking on this additional burden of self-education when we are also trying desperately to cope with the daily management of the disease. That is where CFRI is prepared to help you. Our annual CF Conference is the easiest two-day quick immersion into the recent world of CF research available for the lay person. Our support groups held at the CF Conference and in our modest South Palo Alto office offer special opportunities for meeting others who share similar life experiences. There is always discussion of some new approach to dealing with CF. The CF Adult Retreat is another opportunity to exchange ideas on healthful living with CF, both physical and emotional. If you are not local, we publish newsletters and informative brochures. We also provide informational articles and research updates on various aspects of cystic fibrosis. In this newsletter you will find articles and information on obtaining tapes of the 1997 Conference (in the event you could not attend). Keeping abreast of the latest interventions and treatments is your ticket to controlling CF.
Some people say to me, "I just couldn't come to the conference this year because I was feeling too overwhelmed." Cystic fibrosis is an overwhelming subject. And it is true, the conference provides a huge amount of information in a short span of time in an effort to accommodate our long-distance friends. However, conference attendees say the support groups and mingling with people struggling with like experiences alleviates the sense of overload they had before they arrived. Attendees also develop strategies for dealing with some of the problems at home (both medical and emotional) that had led them to feel so overwhelmed. I also hear people say, "The conference and newsletter are for people with CF whose disease is more advanced. I'm pretty healthy," or "My child is really healthy." Let me remind you again that control is the operative word. To stay healthy or keep your child with CF healthy, certain health regimes must be followed. This is going to differ based on your own CF. New strategies are continually becoming available to help keep people healthy in the earlier stages of the disease. I urge you not to wait ten years until you really need us. Control your disease now while you are so healthy. Educate yourself as to the treatments available. This is my path: to educate everyone I can about this disease and to try to make a difference in CF lives, alleviating symptoms, suggesting more aggressive approaches to treatment, and hopefully, prolonging life. Meeting you and walking this path with you, making inroads into the virulence of this disease, and watching so many of you adopt new techniques into your health regimes has made my own journey with CF easier. It is very rewarding to meet adults with cystic fibrosis and those of you who have children with CF because we have so much to talk about and so much in common. Together we can manage this disease.
We at CFRI appreciate any and all feedback on our program services. It helps us see how we are doing so we can plan for the future. Your donations have made all our programs possible--programs that include funding cystic fibrosis research as well as all our educational support services. Thank you for helping us win the battle against cystic fibrosis.
Sincerely, Ann Robinson
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