Long QT Online Patient Support: Interview with Jon Mettler

Tell us about how and when you were diagnosed with Long QT Syndrome (LQTS). Had other family members already been diagnosed before that time? I was the first in my family to be diagnosed. It happened in 1991 after a sudden cardiac arrest at a ski camp. Subsequently, my father and two younger brothers were diagnosed as well. Unfortunately, my youngest brother died last year at the age of 26 because he refused treatment. He was into science and thought that beta blockers affected his thinking capacity. What were your reasons for starting the http://qtsyndrome. blogspot.com/blog? When was it launched? The blog is part of the QTsyndrome.ch website (www.qtsyndrome.ch). The QTsyndrome.ch website includes an information section and message board as well. I started the blog in December 2005 to upgrade the QTsyndrome.ch website from web 1.0 to web 2.0, which basically means having a better way to communicate with people. QTsyndrome.ch is active on Facebook and YouTube as well. What information is included on the website? How often do you update the site? The QTsyndrome.ch website offers information for patients with LQTS, including frequently asked questions, research, history of LQTS, genetic aspects, and useful addresses of specialists in Europe and the U.S., among other things. The website is updated on a regular basis. On the blog, I write about my experiences in living with LQTS and an ICD, and I comment on recent discoveries and progress made in the research of LQTS. I try to write at least one post each week. Tell us about the other contributors to the blog. How did they become involved? QTsyndrome.ch celebrated its ten-year anniversary in 2007. For the occasion, we decided to open the blog to others. The contributors are either readers of the blog or “acquaintances” made throughout the years on the QTsyndrome.ch website. They all have in common that they have LQTS. I asked them to participate. What sorts of interesting stories or responses have you received about the website/blog? There have been a variety of stories ranging from funny to touching, including the patient who got her first ICD sent back to her as a souvenir, to others who describe their daily dealings with LQTS, to those who have lost loved ones. Since having an ICD implanted, I’ve started concentrating more on the practical aspects of living with a defibrillator. For instance: Is it safe to play with the Nintendo Wii console or stand on the Wii Fit Balance Board? What impact has having a blog made on your life? My life has been enriched. Through the blog, I have “met” a lot of people living or dealing with LQTS. I’ve heard a lot of stories, some of them heartbreaking, but most of them full of determination to master life despite LQTS. It gives me the feeling that I am not alone in this endeavor. On the other hand, people confronted with the diagnosis of LQTS for the first time have told me that it helped them to see that there is a guy out there living quite well with the disease. What do you think is the most important thing for doctors to understand about people living with Long QT Syndrome? Also, what do you think is the most misunderstood or frustrating aspect about the disease? I think most doctors do not understand the psychological impact of living and dealing with LQTS. Having a potentially lethal disease and/or getting shocked back to life all the time is not easy to cope with. The most frustrating aspect for me is that there is no cure yet. Someone leaving a comment on my blog stated that taking beta blockers and/or implanting an ICD is “like sticking a BAND-AID® over an open wound that will not heal.” Are you involved with any other Long QT organizations or do you participate in any other arrhythmia support groups? We are creating a foundation in honor of my late brother — The Maël B. Mettler Foundation for the Prevention of Sudden Cardiac Death — with the purpose of collecting money for LQTS research in Switzerland. It is expected that this foundation will be up and running by the end of this year. QTsyndrome.ch itself is an independent non-profit loose network of LQTS patients, researchers and specialists in Switzerland and Italy. We stay in touch through organizations around the world such as SADS (USA, United Kingdom, Australia), CARE (USA) and PACE (South Africa). Tell us about your life today. What concerns, if any, do you have about Long QT or about the future? What research would you like to see done in this field? I have been without symptoms for 17 years — thank goodness — and hope to stay that way with my beta blocker therapy. I am leading a normal life, going to work and living in a relationship. I decided to have an ICD fitted last year after having proposed to my American fiancée. We are getting married this May. I look at the disease as an opportunity to grow as a human being through the challenges. As a patient with the LQT3 type, I hope that research in the field of shortening the QT interval with drugs is not neglected. Furthermore, my hopes lie with genetic research and the technological progress medicine makes concerning ICDs. For more information, please visit: http://qtsyndrome.blogspot.com/ www.qtsyndrome.ch