Over 40 patients and caregivers came together on October 9, 2008 for a dinner presentation and panel discussion on “Available Therapies for Pulmonary Arterial Hypertension” at the Tillerman Restaurant in Las Vegas, Nevada. The speakers were Matthew Hegewald, MD, Natalie Kitterman, RN, BSN and Lora, a PH patient. Also present were Debbie Castro, Director of Volunteer Services for the Pulmonary Hypertension Association; Linda Ocker, Mack McCarthy and Julia Downie, local PH Support Group Leaders; and many PH patients from the local Nevada-Arizona area.
During a delicious six-course meal, Dr. Hegewald gave talk about the stages of PH and all available treatments, followed by Natalie Kitterman’s presentation on the practical aspects of the disease and managing the day-to-day issues with PH and PH therapies. Lora then shared her struggle with PH and how well she is doing on the Remodulin subcutaneous pump. Debbie spoke about the patient resources that PHA provides including the Survival Guide, website, support groups and the informational pamphlets she brought; Mack spoke about his support group, Desert Puffers, and the benefits of participating in a group as well as the help provided by PHA including the patient-to-patient helpline. Mack distributed the most recent issue of the Desert Puffers support group newsletter, the "Tri-State Don't Hold Your Breath Gazette," and the DVD “Living with PAH Today.” Dr Hegewald was generous with a Q&A session at the end of his talk, and at the end of the program, he passed among the audience for one-on-one contact, which the attendees said was very helpful. The event was sponsored by United Therapeutics and we hope that patients will continue to meet in Vegas for support and education.
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