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Adults Who are Affected by OI

 

Take Charge of Your Health

A Tool Kit of Materials for Adults who have OI and Their Doctors

For All Adults

For Teens and Young Adults

To Share with Your Doctors

 

The Adult Health Initiative: Working to Improve the Health and Well-being of Adults with Osteogenesis Imperfecta.

The Adult Health Initiative is a multi-year effort sponsored by the OI Foundation. It is a series of research projects, publications, and outreach efforts to OI Adults and their Physicians. Long term goals for the Adult Health Initiative are to:

  • Increase knowledge about the health status, needs and health priorities of adults with OI
  • Encourage, and when necessary, self-fund studies specifically designed to improve the health of adults who have OI.
  • Equip adults who have OI and their health care providers with information they need to anticipate problems, and when possible prevent or minimize symptoms that are aggravated by time and age.


Activities and Resources

  • OIF website section for Medical Professionals has specific information on the health care needs of adults with OI. Adults are encouraged to review the new podcasts on OI. A link to them is under the Medical Professionals Tab.
  • Brittle Bone Disorders Consortium studies of specific adult OI issues including Quality of Life and Pregnancy for Women with OI.
  • Longitudinal Study of OI. This natural history study is continuing as a key project of the Brittle Bone Disorders Consortium and is collecting information about how OI changes during the years.
  • 2011 Adult Natural History Initiative Survey laid the foundation for identifying and prioritizing the health questions adults with OI are concerned about and how they compare to adults in the general population. Results from this survey have been published. (See the Research and Studies Tab for a link.)

 

Upcoming Research - Pulmonary Function

The OIF is preparing a series of studies related to breathing issues faced by adults with OI. 


Summary: Health Information for Adults

Basics 

  • The general health needs of adults with OI are the same as in unaffected adults. OI may complicate treatment of various illnesses or injuries due to the fragility of the bones, the blood vessels and the internal organs.
  • Special health needs may include pulmonary (breathing issues) and a possible increased risk for heart valve problems.
  • Weight management, healthy diet, appropriate exercise and maintenance of bone mass are the corner stones of health management. 

Issues to Keep Track of 

  • Routine screenings are needed for vision, dental, and hearing.
  • Obtain a baseline Quantitative Pulmonary Function Test (PFT) to monitor lung function. 
  • Until there is more information on heart issues, a baseline echo-cardiogram is suggested for young adults along with blood pressure monitoring.
  • Talk with your doctor about post-menopausal changes to spine, joints, and signs of arthritis.
  • Monitor changes in pain level and discuss with your doctor potential for non-OI problems. 

Taking care of your general health makes a difference.

  • Exercise as possible in a safe and regular manner.
  • Maintain healthy weight; extra weight is a strain on your skeleton and heart.
  • Follow a healthy diet with adequate numbers 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.

Medicines

  • Talk with your doctor about adjusting the dose of medication to your weight and height, rather than age.
  • Monitor the use of NSAIDS due to link to delayed bone healing after fracture.  
  • Minimize the use of drugs that contain steroids because of the negative effects on bone.
  • Discuss your risk of spontaneous tendon rupture seen in people with a connective tissue disorder when using antibiotics known as fluroquinolones (Cipro, Levaquin).


Resources for Adults with OI and their Physicians

  • Factsheets on many topics of interest to adults with OI are listed in the Information Center section of this website.
  • Information Center for Medical Professionals: Section on Adult Care.
  • Podcasts 2015-2016 (See link on Medical Professionals Page).

 


 
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