I had an awesome time at the OI Foundation Conference
this year! It was actually my first one... I thought I'd
share what I took away from this conference.
Here are some of the things I learned:
* Most cases of OI (85-90%) are caused by a dominant genetic defect.
* While there are no concrete stats available, it is estimated there are 20-50,000 people living with OI in the US. The number of people with OI in Canada may be similar to US estimates.
* Exercise is crucial for people with OI. One good workout regimen is stretching.
* Bones can atrophy just like muscles if they are not used.
* Vitamin D is a hormone, not a vitamin.
* Vitamin D plays an important role in calcium absorption and bone health.
* About 50% of people with OI also have dentinogenesis (i.e. brittle teeth). There are also some people who have DI but not OI.
* Pulmonary infection is the leading cause of death for people with OI. This is why ALL people with OI are told to exercise daily and get a flu shot annually.
* Canada needs its own OI Foundation. There used to be an active group, but it dissolved several years ago.
* China has its own OI Foundation, as does the former Soviet state of Georgia.
Here are some things I discovered at the conference:
* Many of us OIers are fun, friendly and talkative.
* Many of us OIers are positive, intelligent and forward-thinking.
* We possess an 'unbreakable spirit.'
* Over 800 people attended this year's conference (#16), the largest one ever!
* Many attendees came from the US and around the world.
And last, but not least...
* There are a lot of cute girls - and pretty ladies - with OI! ;)
Here are some of the things I learned:
* Most cases of OI (85-90%) are caused by a dominant genetic defect.
* While there are no concrete stats available, it is estimated there are 20-50,000 people living with OI in the US. The number of people with OI in Canada may be similar to US estimates.
* Exercise is crucial for people with OI. One good workout regimen is stretching.
* Bones can atrophy just like muscles if they are not used.
* Vitamin D is a hormone, not a vitamin.
* Vitamin D plays an important role in calcium absorption and bone health.
* About 50% of people with OI also have dentinogenesis (i.e. brittle teeth). There are also some people who have DI but not OI.
* Pulmonary infection is the leading cause of death for people with OI. This is why ALL people with OI are told to exercise daily and get a flu shot annually.
* Canada needs its own OI Foundation. There used to be an active group, but it dissolved several years ago.
* China has its own OI Foundation, as does the former Soviet state of Georgia.
Here are some things I discovered at the conference:
* Many of us OIers are fun, friendly and talkative.
* Many of us OIers are positive, intelligent and forward-thinking.
* We possess an 'unbreakable spirit.'
* Over 800 people attended this year's conference (#16), the largest one ever!
* Many attendees came from the US and around the world.
And last, but not least...
* There are a lot of cute girls - and pretty ladies - with OI! ;)
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