Toronto Meeting Report
Toronto Regional PXE Meeting a Big Success!
The Toronto Regional PXE Meeting was held on a beautiful Saturday morning in June in the spacious auditorium of the Women's College Hospital, Toronto, Ontario, Canada. 48 individuals, both newly diagnosed and veteran PXEers, gathered from 17 cities in Southern Ontario for the opportunity to learn more about this rare disease. The last regional meeting held in Toronto was in 1998, so PXEers were pleased to have another event close to home. (Photo: Women's College Hospital) Participants were privileged to have not one but three doctors familiar with PXE provide excellent slide presentations about pseudoxanthoma elasticum. (Photo L to R: Drs. Scott Walsh, Lionel Bercovitch, and Mark Mandelcorn)
The first presenter was Lionel Bercovitch, MD, Clinical Professor of Dermatology at Brown University, and Scientific and Medical Chair of PXE International. Dr. Bercovitch began the session with an overview of PXE, covering the genetics and clinical aspects of PXE, as well as PXE and the skin, including the results of plastic surgery on the skin lesions of PXE.
(Photo: Lionel Bercovitch, MD, Medical Director, PXE International)
Following Dr. Bercovitch was a presentation titled "PXE and the Eye" by Mark Mandelcorn, MD, FRCS(C). Dr. Mandelcorn is a vitreo-retinal surgeon at Toronto Western Hospital. A natural teacher, Dr. Mandelcorn gave clear descriptions of the parts and functions of the eye, and of the major eye manifestations of PXE: peau d'orange, angioid streaks, choroidal neovascularization, and hemorrhage and scarring. He described the existing treatments of eye complications of PXE, including laser and photodynamic therapy, as well as anti-angiogenesis drugs. Dr. Mandelcorn gave an interesting history of the development of three anti-angiogenesis drugs: Macugen, Lucentis and Avastin, and ended with a brief summary of a possible explanation of choroidal folds in macular degeneration. (Photo: Mark Mandelcorn, MD)
After Dr. Mandelcorn's presentation, participants were released for a much needed stretch, refreshments and chatting with new friends.
Following the break, we dove right back into another packed presentation by Scott Walsh, MD, PhD. Dr. Walsh, our gracious host for this event, is Program Director, Division of Dermatology, University of Toronto. He also serves as Assistant Professor at Sunnybrook Health Sciences Centre. Dr. Walsh presented "What's New in PXE Research?", describing the role and regulation of the ABCC6 gene involved in PXE, other genes involved in PXE, and the possibilities for intervening and treating PXE, citing the latest research studies from 2006 through 2009. (Photo: Scott Walsh, MD and participants)
Dr. Bercovitch wrapped up the presentation portion of the day with "PXE Beyond the Skin and Eye." Topics included the cardiovascular system, gastrointestinal manifestations of PXE, PXE and calcium, as well as PXE in pregnancy and in children. He touched on insights gleaned from the epidemiologic study - PXE occurs twice as often in females than in males.
(Photo: Lionel Bercovitch, MD and participant)
Dr. Bercovitch concluded with general recommendations for individuals affected by PXE:
- annual physical exams with special attention to cardiovascular system and eyes
- periodic cardiology evaluation
- stress test before undergoing vigorous exercise program
- avoid aspirin and non-steroidal anti-inflammatory medications unless absolutely necessary
- establish relationship with retinal specialist
- use the Amsler grid
- avoid contact and racquet sports
- use protective eyewear for sports
- develop a heart-healthy lifestyle to minimize coronary risk factors
- healthy diet
- weight control
- aggressive management of hyperlipidemia, diabetes, hypertension
- cease smoking
- lifelong exercise program
- stay informed and inform your physicians!
A lively question and answer period followed the presentations, with Drs. Bercovitch, Walsh and Mandelcorn answering questions submitted in advance as well as those brought fresh to mind during the slideshow.
Participant feedback was very positive. The best part about the meeting was described as the amount and quality of information and meeting others with PXE. Many thank you's were given, to the presenters and to PXE staff, as PXEers drifted away for home, full of new information and hopefully a new friend or two!
(Photo: Terry Mac Dermaid, Assistant Director, PXE International)