OI Foundation's Osteogenesis Imperfecta Wiki

Welcome to the OI Foundation’s Wiki! On this site you can learn and share information about living with osteogenesis imperfecta. A Wiki site like this allows users to add and edit information directly to the webpage, creating a powerful and collaborative community website.

From dealing with the politics of public school systems, to finding clothes that fit, living with the day-to-day obstacles of OI can sometimes be challenging. Read about how others have coped with these challenges or share what has worked for you. Browse through the current list of topics to find helpful information, or simply create a login to start adding your own input.

The OI Foundation reserves the right to remove or edit any inappropriate information on this site.

To ask members of the OI community specific questions about living with OI, visit the discussion forum on our NING site at http://oinetwork.ning.com/.

Do you have another topic that you would like to write about? Please suggest it to the OI Foundation by e-mailing eruebensaal@oif.org

Recreational activities
What recreational activities have you found to be particularly enjoyable for your child? Is there anything that you think parents should know before they get involved with the activity?

Making friends
What has helped your children make friends?

Equipment for Infants and Toddlers (car seats, strollers, bath)
Are there any types of equipment that were a great find for a child with OI? Have you had any bad experiences with any?

Educating school administrators, nurses and teachers
What has worked for you; meetings, brochures from the OI Foundation, letters from your doctor?

Missing school
How do you handle your child missing school due to their OI? Any tips that parents should know about how to minimize the negative impact this may have?

Transition to Middle School
What was most helpful in helping your child make this transition? What should parents do to make this easier for their kids?

High School
What should the parent of a high school age child with OI know? If you are in high school, what tips can you give others?

504 and IEP Plans
What resources were most helpful in completing your 504 or IEP? What obstacles did you encounter that others should be aware of?

Kitchen & Bath
What kitchen or bath modifications have you made to your home?

Exteriors
Have you made any modifications (ramping, etc) to the outside of your home that are helpful?

Handy Gadgets
Have you found, or invented, any handy gadgets to help you in your day-to-day activities around the house?

Shopping
What shopping tips do you have for others with OI?

Altering clothes
Do you have any tricks or tips to what works when altering clothes for people of short stature?

College
What challenges related to your OI did you encounter in college and how did you overcome them?

Living independently
What tips or advice do you have for people about living independently with OI? What challenges can others expect?

Coping with Type I
What obstacles are unique to coping with Type I OI? How have you overcome them?

Careers
What is your profession and what challenges or successes have you experienced related to your OI? Do you have any tips or advice for others entering the workforce?

Cars and Other Vehicles
What obstacles did you encounter while getting modifications to your vehicle? Have you had a particularly good or bad experience? What should anyone exploring the option of buying or modifying a vehicle know?

Finding and getting involved with a support network group near you
Please visit our Support Networks at http://www.oif.org/SupportGroups to find a group near you.

Volunteering with the OI Foundation
Help make a difference. Please visit our Becoming a Volunteer page at http://www.oif.org/site/PageNavigator/HH_Volunteers to learn about volunteering for the OI Foundation.