Kinesiology & Health
News & Events
School of Education, Health, and Society
5/5/09
Helaine Alessio, chair of Miami University’s kinesiology and health department, and Dean Smith, a clinical faculty member in the department, have produced a video that provides non-weight bearing exercises for patients with Pachyonychia Congenita, PC, a rare genetic disorder that causes pain that often intensifies from skin friction and weight bearing activities.
PC is caused by a single mutation in any one of four keratin genes, primarily affecting the nails and skin. Many patients are forced to live a sedentary life. Alessio and Smith hope the video of non-weight bearing exercises can enhance health and fitness for them.
“People with PC experience chronic pain, have serious ambulatory limitations, and are at risk for health-related diseases associated with being physically inactive,” Alessio said. “Our hope is that the video will help these patients increase muscular strength and endurance of their arms and legs, flexibility of many major joints, and build up their cardiovascular endurance.”
There are about 1,000 known cases of people in the world who suffer from Pachyonychia Congenita, although that number may be low, since many cases go undiagnosed, according to Alessio.
Smith, a chiropractor, made sure proper form was used in the exercise video, in order for patients to be able to do the exercises correctly.
Alessio was prompted to develop the video after attending a conference where a parent asked for help for her daughter who had the disease.
“I knew about non-weight bearing exercises that could enhance fitness and expend calories almost as well as weight bearing,” Alessio said. “If PC patients follow the video on a regular basis, they will experience the benefits of exercise that many other people who perform weight-bearing exercises experience – physically, mentally and socially.”
The video is available through the Pachyonychia Congenita Project. Mary Schwartz, director of the organization, said the video has been helpful to the patients who’ve accessed it.
“This is a remarkable video and one-of-a-kind for PC patients who often find traditional exercise programs impossible to use,” said Schwartz. “The exercises in this video are designed to avoid putting pressure on the extremely painful blisters and keratoderma on the soles of the feet of most PC patients. Whether they use the exact exercises or adapt those to their own needs and situation, the presentation is a very positive service to those suffering from this ultra rare disorder."
For more information or to access the video on the web, visit www.pachyonychia.org.