The Yampa Valley has become a focus area for multiple sclerosis research, and regional educators and physicians are calling those with the debilitating disease to aid in the study.
The Rocky Mountain Multiple Sclerosis Center has teamed with the Northwest Health Specialists Center, Yale University and Mountain Medical Specialists to conduct a study on multiple sclerosis diagnosis in the valley.
The study is getting underway with a call to those with MS to aid in gathering information about the disease by having those suffering from MS fill out a questionnaire.
Pam Young, manager of Northwest Health Specialists Center, is the driving force behind the study. The questionnaire is available at her clinic.
"Participating at this level is absolutely free and essential to the development of the study," Young said. "Those in the area with MS or those in the area who have a relative living outside the area are urged to come forward and request a questionnaire. We will not exclude anyone from the gathering of data for the study. The goal is certainly to gather as much information as we can about the disease and then to identify if we are living in a hot spot for the disease."
Young said that she believes that there is a higher number of incidences of MS in the Yampa Valley than in the rest of the country and that was one reason she began pushing Yale University and the Rocky Mountain MS Center to investigate this area.
"I have a family connection to the disease and I have an opportunity because of my position to assist in the research for the disease," Young said. "If there's something we can do at a local level to slow down the progress of the disease and improve the life of MS sufferers, then we should do it. Even though I personally am not an MS sufferer, it has impacted and touched my life."
Lee Shaughnessy is the patient education coordinator for the Rocky Mountain MS Center. She said that she is not convinced that there is actually a large number of MS sufferers in Northwest Colorado that were born and raised here. She said the chances are more likely that those with the disease have relocated to this region for an improved quality of life.
"Usually one in 1,000 will have the disease. In Colorado the statistic is closer to one in 800 and we want to see if the number of MS sufferers is even greater in Northwest Colorado," Shaughnessy said. "There are many people in your area that believe that there is too great of incidence of the disease and who believe that that merits some research."
Dr. Pamela Kinder, of Mountain Medical Specialists, is a neurologists who treats MS sufferers.
"A population based study will be very helpful," Kinder said. "A study of this kind will help sort out how many people are actually from our area, the age of their diagnosis and so on. It will give us an idea if there is a high incidence of MS here."
Kinder will help facilitate the study and said she currently treats about 45 patients with the disease.
"I diagnosed three people with MS on Wednesday and of those three people one of them was born and raised in this area," Kinder said. "I think it will be very interesting to participate in the study and I think it will help pin down whether there is a problem in our area or not. Dr. Vollmer is a great person and a wonderful doctor and it's really exciting that he is working on this study.
Dr. Timothy Vollmer is an associate professor of the department of neurology at Yale University. Vollmer is also the director of the Yale MS research center and he specializes in neurology and neuroimmunology.
"We will be communicating with Dr. Vollmer through telemedicine," Young said. "Our technology at the clinic will enable us to conduct this research and transfer the data to Dr. Vollmer very quickly."
The Rocky Mountain MS Center is located in Englewood, Colo., but Shaughnessy said that the clinic is dedicated to rural medicine and she hopes there is a large participation in the study so that the Yampa Valley can set a precedent for the rest of the country.
"We have a commitment to the care of people in rural areas who have MS and there is not always the population to support the kind of MS specialty care that is available in cities," she said. "People in rural areas often times have much less information about current treatments to the disease and we don't want them to get substandard care. If there is a true over representation of MS in your area, there may be something going on with a genetic strain, environmental factor or social factor. We really need a demographic study."
MS is an unpredictable disease of the central nervous system in which a vital insulating material called myelin is damaged or destroyed. Myelin serves as the insulation on nerve fibers. When this insulation is damaged or destroyed, the nerve impulses from the brain and spinal cord are interrupted, resulting in various symptoms.
People with MS may experience any number of symptoms.
Some symptoms include decreased or blurred vision, weakness, speech or swallowing difficulties, tremors, dizziness, thinking or memory problems, extreme fatigue, decreased sensation, difficulty walking, balance or coordination problems and bowel or bladder dysfunction, according to Shaughnessy.
The cause for MS remains a mystery. It's been described as a "giant puzzle" by scientists searching for the many pieces. Some scientists believe there are certain factors that contribute to the disease climate, age, immunology and virus are some of those factors.
"This is a disease of young adults," Shaughnessy said. "It's usually diagnosed in people in their 20's to 50's. And, although it's not a fatal disease 95 percent of those with it do not die from it but it can be extraordinarily disabling. It's like having a stalker in your life, you never know when it's going to strike."
Shaughnessy said that all the data collected from the study will be logged in a national MS registry called North American Research Committee on MS (NARCOMS). NARCOMS is a non-profit organization that is dedicated to the accelerated development of better therapies and health care services for individuals with MS.
Young said that if there are MS patients in the area who are unable to pick up a questionnaire and fill it out on their own, the Visiting Nurse Association has offered to deliver the questionnaire to their MS patients who are unable to obtain it on their own.
"It is critical that everyone participate in this study, we don't want to leave anyone out," Young said. "Some MS patients aren't real mobile and we're here to help those people get involved in the study."
To obtain a MS questionnaire or for more information on the MS research program, contact Pam Young at Northwest Health Specialists Center at (970) 824-1900.