Huntington Disease Specialty Services
At Kaiser Permanente, both symptomatic (diagnostic) and pre-symptomatic (predictive) testing for HD is available. Diagnostic genetic testing is performed to confirm a clinical diagnosis of HD in individuals showing signs and symptoms of HD. This type of testing is usually ordered by a neurologist. Predictive testing is performed when there is a family history of HD, but the person having testing does not have any symptoms of the condition. Predictive genetic testing is only available through the Genetics department and involves a series of in-person appointments to address the sensitive issues around this type of genetic testing.
The KP Huntington Disease Predictive Testing Program has been offered at KP San Jose since 1989. The majority of KP members seeking pre-symptomatic genetic testing for HD are seen here. In 2003, KP Sacramento also began offering pre-symptomatic testing. A genetic counselor is available by phone at both of these medical centers to answer general questions about the testing options and process.
What is Huntington Disease?
Huntington disease (HD) is an inherited condition that causes certain brain cells to gradually waste away. The changes in the brain lead to uncontrolled movements, a decline in thinking abilities, and emotional and behavioral problems.
Huntington disease can start at almost any age. Most often the first symptoms begin between the ages of 30 and 50. The earliest symptoms can include balance problems, involuntary movements of the body and limbs, and personality changes. Symptoms usually appear gradually and vary from person to person. The condition is slowly progressive. Over a period of 10 to 25 years the ability to think, speak, and walk declines.
There is no cure at this time. However, there are researchers working on this issue and drug treatments that help improve the quality of life for those with Huntington disease.
Huntington disease affects all sexes, races, ethnic groups, and ages. Each child of an affected parent with Huntington disease has a 50/50 chance of inheriting the gene that causes the condition. A person who carries the gene will eventually develop Huntington disease.
San Jose Predictive Testing Program
This program began in 1989 for all of KP Northern California members. A team of providers is involved including a medical geneticist (Dr. David R. Witt, MD), a genetic counselor (Taryn McDowell, MS) and a psychologist (Dr. Lisa Fowler, PsyD). The program follows the recommendations of national and international organizations for providing HD predictive genetic testing. A person seeking predictive genetic testing will be seen in person by the provider team for several visits in order to address all aspects of HD testing. A person is not obligated to complete the testing process and may stop at any time.
Given the sensitive nature of predictive testing for HD, the program maintains maximum confidentiality possible within the KP system. The predictive testing program does not provide on-going clinical evaluation for signs and symptoms of HD. At the request of the patient, a referral is made to a neurologist with expertise in movement disorders (Dr. Robin Fross, MD at KP Hayward).
For more information about this program please contact:
Taryn McDowell, MS, CGC
Genetic Counselor - KP San Jose
(408) 972-3300
Sacramento Genetic Movement Disorder Clinic
The Sacramento Genetic Movement Disorder Clinic provides comprehensive care for patients at all stages of Huntington disease. Both symptomatic and pre-symptomatic genetic testing is available through this clinic. In addition, services have recently been expanded to include other genetic disorders that affect movement, such as spinocerebellar ataxia (SCA), dystonia, dentatorubral-pallidoluysian atrophy (DRPLA), and Freidreich's ataxia. Dr. Suketu Khandhar, a neurologist with expertise in movement disorders, provides medical management. A social worker, Maggie Marshall, LCSW, sees each patient at the clinic to assess their needs and provide support as needed. Each family also has access to genetic counselors and geneticists as needed. Patients are typically invited to clinic annually and may meet with Dr. Khandhar between clinic visits as well.
Clinics are held at Kaiser Sacramento once every quarter (about four times per year). At each clinic, Dr. Vicki Wheelock, Terry Tempkin, RNC, MSN and a social worker come from the HD Center of Excellence at UC Davis to give informational talks about a variety of issues related to HD (medications, management, research, exercise, insurance issues, health directives etc). These talks are open to all HD patients and their families.
For more information about this clinic please contact:
Mara Sifry-Platt, MS, CGC
Genetic Counselor - KP Sacramento
(916) 614-4791 (T,Th) or (916) 474-2512 (M,W)