Archive for the ‘osteogenesis imperfecta’ Tag

Putting it to the test

We are slowly starting the testing phase of our OI Panama project.

The Web structure is complete, most of the Flash elements are working properly and all the stories are finished, edited and posted on the Web site. All we are missing from the site is a large chunk of multimedia content.

Unfortunately, multimedia comprises about half of the Web site so there are a lot of holes. We are waiting on all of the videos and photo slideshows to be completed so we can upload them to the site.

While we wait on that content we are making sure links work and go to the correct pages and that all the text is spelled correctly. So far, so good.

When we get all the multimedia up on the site there will be a lot more to do. We will have to watch videos and slideshows and make sure things look good and that there aren’t any mistakes. Then we will have to check that they load and play correctly on the site.

So, there is still a lot to finish, but we are close. You can check it out at OIPanama.com, but remember that it is still under construction so we will be making tweaks and changes here and there. Feedback is welcome!

We present the finished project to the entire interactive media class and other school of communication faculty members Tuesday afternoon.

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Moving right along with OI site

I finished writing all the stories for our OI Panama Web site. What a relief!

It took all week, but I finally cranked out 10 stories about the families affected by OI, the health care system and the Crystal Children Foundation.

I hope that these stories along with the video and photo slideshows, that some of my other team members are working on, help tell the stories behind this cause. We saw so much when we were in Panama and we want to share what we witnessed with the world.

There is much left to do for the Web site, but we are progressing at a steady pace. There are a lot of videos and slideshows left to produce and a few Flash elements that need to be completed, but a lot of the big ticket items are finished.

The stories I wrote still need to be translated and not all of them are on the Web site yet, but that should all be completed Sunday.

I don’t want to jinx our project, but aside from a few videos, we should be on schedule to complete on time if not early. We are presenting our final project to the rest of our iMedia classmates Tuesday afternoon and I am excited to see everyone’s results.

OI exists everywhere

I think a common misconception for folks I have been talking with since my return from Panama is that Osteogenesis Imperfecta is specific to Panama. It is not.

Cases of OI exists all over the world, in fact here in the U.S. there are between 20,000 and 50,000 cases.

Well then why are we doing this project just for Panama? I will tell you.

Here in the U.S., patients with OI still suffer and they still break a lot of bones and many have really difficult childhoods, but they can receive treatment to help improve their quality of life. In Panama they can’t.

If you think the health care system in the U.S. has issues just research a little bit about Panama’s. It is not good at all. Most of the children in Panama with OI have no heath insurance and even if they do, the drug needed to strengthen their bones and joints is unavailable. We have it here in the U.S., but in Panama the government refuses to approve it.

Patients could travel to the U.S. or Europe to get it, but they can’t afford the travel costs. There are also hundreds of unreported cases in Panama because awareness of the disease is limited. So many people live in remote areas and they don’t even know that their child has a disease and that something is wrong. If they take them to the doctor, the doctors don’t recognize the illness as OI, they just treat the broken bones and send the children home.

Here in the U.S. children can receive the full treatment which consists of physical therapy and treatments of this drug called Pamidronate which is given every three to four months by injection. Without that kind of treatment a child with OI will continue to fracture bones.

We saw cases where children had broken every bone in their body and most of them multiple times. I can’t even imagine that. Here in the U.S., we need to be aware that it exists here too. We need to help those in need everywhere, not just in Panama, but here in the U.S. too. Fortunately, the situation in the U.S. is much more under control than the situation in Panama.