Notes on a talk given at the Annual CFRI Conference
Seven adults with cystic fibrosis spoke in a panel on their experiences with the disease and growing up, health care, jobs, relationships, new drugs, and physiotherapy. These speakers represented seven different countries: Sam Hilliard and Christian Simpson were from England, Lisa Hoyer from Austria, Mitch Nesser from Australia, Ken O'Brien of the U.S., Jose Felito from Spain and Beatrix Rediman, M.D., originally from Germany but currently residing in Finland.
Despite country of origin, these adults shared many common experiences. Except for Dr. Rediman, all the adults were diagnosed as infants or small children, and three had siblings with CF. Being diagnosed as a teenager, Rediman struggled with the denial of the doctors which made it harder for her to ultimately accept her disease. In all cases, parents tried to bring up their CF children as "normally" as possible, expecting them to participate in school and sports. Most of the panelists took over much of their health care as young adults in their mid-teens to early twenties. Some mentioned a stricter focus on their health care after a bout of illness during this period of transition. The amount of time required to care for their health was an issue for all of them when considering job opportunities. Many of them compromised by choosing volunteer work. Each of the adults with CF seemed to be both knowledgeable about and involved with their local CF organizations and considered this involvement to be very important to their well-being.
The panel discussed health care in each country. While there were variations from center to center that all the panelists mentioned, most of the adults were very satisfied with their physicians and the care provided. Jose Felito (Spain) and Beatrix Rediman (in Finland) felt that they had to be more vigilant about their care because CF was less common in those countries. Mr. Felito did say that Spain had progressed greatly in recent times and before that he had been allowed to travel to centers in England to seek care. Dr. Rediman had to deal with the difficulty of being assigned physicians who were not necessarily familiar with CF and the struggle to be allowed to see a specialist. With the exception of Ken O'Brien (U.S.), all the speakers were covered by their respective country's health care system, slightly different forms of socialized medicine which were paid primarily through taxes, although frequently there were minor-to-moderate costs attached to the care, especially for medications. Mr. O'Brien purchases his health insurance through the state of Illinois and discussed problems with red tape and excessive paper work, a situation that Americans understand. With regard to research funding in their countries, very little money is available from most of the governments, and in almost all cases there were private organizations raising money for research. Smaller countries, like Austria, frequently had researchers who teamed up with studies taking place in larger countries.
Finally, the panelists discussed physiotherapy in their countries. It appeared that PEP, Autogenic Drainage (AD), the Active Cycle of Breathing, Chest Percussion Therapy (CPT), and sports and physical activities were commonly used in all countries. However, CPT was mainly used in the cases of infants and small children in all countries with the exception that in the U.S. it is frequently employed into adulthood. Most of the adults polled used one or more forms of physiotherapy, with the Active Cycle of Breathing being very popular among this group.
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