Adult Health Project: Working to Improve the Health and Well-being of Adults
with Osteogenesis Imperfecta.
Health Project is a multi-year effort
sponsored by the OI Foundation and led by a group of volunteers – adults with
OI and physicians—who are gathering information about how OI affects adults.
Its long term goals are to:
Increase knowledge about the health status, needs
and health priorities of adults with OI
Publish information for health care providers and
adults with OI
Encourage research on topics relevant to OI during
the adult years
It is believed that by identifying issues that
emerge at each stage of adult life it will be possible to equip adults who have
OI and their health care providers with information they need to anticipate
problems, and potentially prevent or minimize symptoms that are aggravated by
aging. As part of this effort, the OI
Foundation has supported the development of the OI Adult Natural History
Initiative (OI-ANHI), which seeks to better define the health issues faced by
adults with OI.
April 2010 Science Meeting: Improving Musculoskeletal
Outcomes for Individuals with OI
o Presentations indicated that OI affects not only the skeleton but also
virtually every organ system and that information on OI’s affects health during
adulthood was limited.
Exploratory Committee Formed
o Dr. Laura Tosi who chaired the April 2010 OIF Science Meeting formed an
exploratory committee consisting of physicians and persons with OI to discuss
options for expanding knowledge on the impact of OI on adults.
Focus Groups, July 2010
o During the 2010 OI Foundation National Conference more than 50 adults
volunteered to talk about their experiences with OI as adults.
OI-ANHI Survey, 2011 was open to
participants from October 1-December 31. The survey collected information on
the current health status, needs and health priorities of adults with OI.
The data provided by over 800 participants is currently being studied. A
summary of results will be published in late April 2012.
Post a summary of the OI-ANHI Survey findings on
this website, Spring 2012
Present the findings of the OI-ANHI survey at the
OIF Science Meeting, April 2012
Present the OI-ANHI Survey findings at the OI Foundation National Conference, July 2012
Use the survey findings to update and expand the OIF information pages relevant to adults
Utilize the findings to inform the OI research
community of possible areas for new research
Summary: Basic Information for Adults
Often there are fewer fractures after the end of puberty (late teens).
Additional bone loss from osteoporosis on top of OI is common.
Taking care of your general health makes a difference.
Exercise as possible in a safe and regular manner.
Maintain a healthy weight; extra weight is a strain on your skeleton and heart
Do not smoke and avoid second hand smoke; smoking is a problem for bones and lungs.
Follow a healthy diet with adequate amounts of calcium and vitamin D.
Monitor respiratory health especially if you have scoliosis or compression fractures of the spine.
Protect your hearing.
Take safety precautions; trauma from accidents is a leading cause of death.
Use seat belts in vehicles and wheelchairs.
Be alert to situations at home and away that could cause a fall.
OI is a collagen disorder so more than bones are affected.
Fallen arches are common.
Old injuries to feet ankles or knees may become a problem due to loose ligaments.
For most types of OI there is a 50 percent chance of passing OI on to your children.
Adults who have OI have the same risk as other American adults for developing cancer, diabetes, and heart problems.
Below are Factsheets especially for adults with OI. A full listing of Factsheets can be found in the Information Center.