Physicians Participate in International Study Group

The University of Kansas Health System is one of only two healthcare facilities in the state to participate in the Huntington Study Group – an international group of physicians and other professionals who are dedicated to finding treatments that slow the progression of Huntington’s disease while working toward its cure and addressing specific symptoms.

New clinical trials are introduced routinely through the study group, and eligible patients can participate in these studies by talking to their physician or calling 913-588-1227.

About Huntington’s Disease

The family disease

Huntington’s disease is a disorder in which nerve cells in the brain progressively die. It is genetic and affects the mind, body and emotions of its victims. Huntington’s disease affects 30,000 people in the United States. About 200,000 Americans are at risk because of the genetic nature of the disease.

The disease commonly appears in those who are between 30 and 50 years old, although 10 percent of those with the disease are children. The disease can take many years to progress to its most extreme state. Although the symptoms appear gradually, its progression ends up affecting a person’s entire life.

Symptoms may include the following:

  • Subtle changes in coordination, including involuntary movements, progressing to more pronounced coordination issues and muscle stiffness
  • Difficulty thinking through problems
  • Psychiatric issues, including irritability that might lead to depression
  • Diminished speech
  • Difficulty swallowing

In the later stages of the disease, patients are likely to be totally dependent upon a caregiver.

Huntington’s disease affects the entire family. Everyone carries the Huntington’s gene, and those with an abnormal copy of the gene will develop symptoms at some point in their life if they live long enough. The chances of a child receiving the abnormal gene from a parent are 50 percent.

There are many decisions to be made after a diagnosis. The University of Kansas Health System provides a care team that helps both the patient and family learn to live with Huntington’s disease. In addition, the health system has one of the region’s only programs to provide genetic testing and participate in ongoing clinical studies designed to help slow the progression of the disease and address specific symptoms.

Tools to determine the problem

Because Huntington’s disease is hereditary, the abnormal gene is present from birth. However, symptoms usually begin later in life (30s-40s). While genetic tests can be done, these alone cannot provide a diagnosis.

A specialist in neurological movement disorders will look at different areas of a person’s life and medical history and complete a comprehensive physical examination to determine if symptoms are related to Huntington’s disease. These assessments include:

  • Behavior assessment
  • Cognitive assessment
  • Detailed family history
  • Medical history
  • Neurological exam
  • Physical exam
  • Psychological exam

What can be done

Because there is no cure, The University of Kansas Health System care team helps manage the symptoms of Huntington’s disease and helps patients and their families cope with the diagnosis. Together, you and your care team will determine the need for:

  • Medications for movement or psychiatric disorders
  • Counseling for those affected as well as caregivers
  • Speech therapy for improving the ability to speak or swallow or for devising new means of communication
  • Physical therapy for maintaining strength, flexibility, balance and coordination
  • Occupational therapy to develop strategies for living at home with the disease

Neurologists at The University of Kansas Health System are on the forefront of research to help slow the progression of Huntington’s disease and to address its symptoms while also participating in studies to find a cure for this genetic disease.