If you've ever had to get a cat scan, an MRI or an X-ray you know how cumbersome the films can be. Especially if you have to take them to another doctor.
But now a new app promises to help patients free themselves of all this and puts the information right in the palm of their hands.
"She was a competitive gymnast and cheerleader and she couldn't do her tumbling, all of a sudden she kind of lost it week by week. She couldn't do it." Amy Gleason is talking about her daughter, Morgan.
"It took us about 15 months to get a diagnosis because none of the doctors had ever seen anybody with it.," she said.
"It" was Juvenile Dermatomyositis (der-mato-mya-sitis) or JM, a rare autoimmune disease that creates muscle weakness, extreme fatigue, and a distinctive skin rash among other complications.
Amy's daughter, Morgan was diagnosed when she was just 11 years old.
"It was very difficult at the time, "Amy recalls.
There is no cure for JM. The goal with treatment is to get it into remission. And that requires lots of meds.
Amy says Morgan takes "twenty one meds, well 21 pills a day."
And lots of doctors. Amy says of her daughter, "She has a lot's of different specialists. She has a quite a long history with these providers and they don't talk to each other so I become the one in the middle.
Amy was almost at her wit's end when she ran into Morris Panner at a medical conference.
Panner says, "When I first met Amy I said wow. I have a lot of respect for what you do. I said I think we have something that might make your life a little easier."
An app developed by Panner's company, Dicom Grid takes medical records, scans, all sorts of information and securely stashes it in one place.
"It's as easy as anything you use on your iPad," Panner says. "You can simply see it, share it, and act on it. "
Doctor John Karis of the Barrow Neurological Institute says, " It enables information obtain at a variety of different points in time, at a variety of different locations to be real time available to physicians and other healthcare providers no matter where they are in the world."
Amy created a free account, downloaded Morgan’s images and began closing the information loopholes in her daughter's care.
Panner says having that power as parent is something he can relate to.
His son had some health challenges when he was younger.
He says, “I remember that incredible feeling of frustration, fear and love that makes you want to be able to do something for your child."
Amy is doing her part for Morgan and Morgan is doing her part to get better. Her mom says, "She's doing better now. She got all A’s in her freshman year."
Smart and tough, Amy says. And now free to enjoy life's more important moments.
WTTG FOX 5 & myfoxdc
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