In September, 2011 the Norwegian PH organization ran their first patient meeting. 14 PH patients and 8 of their caregivers attended the conference.
“It was great to meet some of the other PH patients,” expressed one of the participants. “I have had PH for many years, and I have never met another person with the same disease. It is wonderful to meet and talk to other people that understand me and my situation!”
The Norwegian PH Association had made a comprehensive two-day program with several prominent speakers. However, the greatest benefit of the conference was probably the opportunity to meet with other PH patients and caregivers. Valuable friendships were formed and a lot of important exchange of information took place.
During the formal part of the meeting, the leading Norwegian PH specialist gave a presentation about the disease and the treatment available in Norway. The patients in Norway are fortunate in that they do not have any restrictions as to which medications are available. The medications are, furthermore, free of charge due to the centralized public health care system. One method of medication that received particularly attention was the implanted pump. One of the participating patients has had this pump installed and demonstrated it in front of the group. The implanted pump is working very well for this patient, and it has enabled her to continue her work as a full time nurse at a clinic for people with lung and heart diseases!
In addition to the PH specialist, a leader of a rehabilitation clinic presented their rehabilitation program. Although patients with other heart and lung diseases primarily attend the program, they also had experience in helping PH patients. Furthermore, in spring 2012 they will run a rehabilitation program for a group consisting only of PH patients.
Other presentations included:
· The psychological challenges of living with a chronic illness
· A patient’s private survival guide
· PH medication of today and the future
· Actelion’s new web page and brochure for newly diagnosed patients and their caregivers.
Another goal for this first patient meeting was to create awareness for PH since it is estimated that there are the same number of undiagnosed cases as there are diagnosed cases in Norway. A local newspaper (36,000 subscribers) featured one of the patients in an article about PH. In addition, the leader of the Norwegian organization and the leading PH specialist were interviewed in a radio program that was aired nationwide.
The patient meeting was a great success and will be repeated next year. The meeting was made possible through a Tom Lantos grant plus a generous contribution from Actelion.
