 |
| Single Gene
Disorders and Disability (SGDD) |
Because females have two X chromosomes, they usually do not get the
symptoms of X-linked mutations that they carry. However, it is becoming
apparent that female carriers of several X-linked conditions do indeed have
clinical symptoms. Females who are DBMD carriers
(whether or not they are manifesting) later in adult life sometimes develop
heart problems that are characterized by shortness of breath or an inability
to do moderate exercise. The chance that a female carrier will develop heart
problems is not known. However, such heart problems can be serious and life
threatening. While there is no cure, a number of medications are available
that can help reduce the effects of these heart problems.
The goal of this project is to use a large-scale, mailed, self-completed
survey to collect information about the knowledge, beliefs, and behaviors of
female DBMD carriers toward cardiac health care. The objectives of the
project are: (1) to identify factors or barriers that influence use of
preventive cardiac health care in female carriers of DBMD and (2) to develop
successful and innovative strategies that will increase preventive cardiac
health care in this population. At the current time, there are no specific
recommendations for female carriers of DBMD regarding cardiac testing and
treatments, so the goals of this project are to identify ways to promote the
recommendations once they are available. It is likely that the results of
this study can also be used to improve health messages to carriers of other
X-linked conditions. This project will be carried out collaboratively by CDC
and Battelle Centers for Public Health Research and Education.
[Return to Top]
Date: September 1, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities
|
|
|
