Sick and ignored: our medical shame Sep 7, 2008
She said patients and families affected by conditions such as fibrodysplasia ossificans progressiva, in which muscles and tissues turn into bone, and Ehlers-Danlos syndrome, which creates "rubber people", generally fall into social, health and funding gaps because their numbers don't demand attention. "Researchers have told us that rare diseases miss out because it's hard to get government grants and pharmaceutical companies don't make money of out these diseases," she said. (Sydney Morning Herald -- Australia)
Medical anomalies, human conditions Jan 5, 2008
The first, , published in 2002, contained images of the museum's exhibits: the fused skeleton of Harry Eastlack, who suffered from Fibrodysplasia Ossificans Progressiva, or the the plaster cast of Siamese Chang who were conjoined at the liver. Both books, Lindgren said, are meant to extend the original mission of the museum set forth by creator Thomas M. (The Scientist)
Local teens battling FOP excited by research gains Aug 6, 2007
And both have seemed to capture the hearts of Santa Maria residents who have joined in their battle to fight their disease of fibrodysplasia ossificans progressiva, a disease that causes bone to form in muscles, tendons, ligaments and other connective tissue. When Eckart reaches out to shake hands her right arm and upper body are stiff, but her handshake is soft and gentle. (Santa Maria Times)
Correction: Mother's name incorrect May 1, 2007
In Sunday's Health section, an article about the rare bone disease fibrodysplasia ossificans progressiva, or FOP, had an incorrect name. The mother of FOP patient Erin Danzer is Lori Danzer. (North County Times)
A plea for a rare disease: Illness turns muscles into bone Apr 29, 2007
Lori Danzer and her daughter, Erin, 8, who has fibrodysplasia ossificans progressiva, sit together in their Oceanside home recently ... It has a jawbreaker of a name, typical of diseases not common enough to get vernacular monikers: fibrodysplasia ossificans progressiva, or FOP. ... About 600 people worldwide are known to have the illness, according to the International Fibrodysplasia Ossificans Progressiva Association. (North County Times)
RARE BONE DISEASE THREATENS 3-YEAR-OLD WATERSEDGE GIRL Mar 23, 2007
Fibrodysplasia ossificans progressiva, or FOP, causes bone to grow in places where it shouldn t be, like muscles, ligaments, tendons and other connective tissues. Bone grows wildly, essentially creating a second skeleton that freezes joints, puts pressure on internal organs and eventually causes death. (Dundalk Eagle, MD)
More of this story Mar 23, 2007
The one-hour program will feature a patient suffering from fibrodysplasia ossificans progressiva, or FOP; a crippling condition that has left Rice almost immobile ... The producers of Grey's Anatomy employ their own team of medical researchers who worked closely with the International Fibrodysplasia Ossificans Progressiva Association to more accurately depict the character's condition and complications associated with FOP.. (Porterville Recorder, CA)
