About FOP

o FOP is an abbreviation for Fibrodysplasia Ossificans Progressiva.

o FOP is an extremely rare and debilitating medical condition where bone forms in muscles and other soft tissues of the body.

o A variation of FOP called Heterotopic Ossification (HO) strikes nearly 65% of wounded military personnel and 10% of orthopedic surgery patients and is triggered by severe injuries.

o During a flare-up (characterized by large swellings), extra bone can form across the joints, restricting movement.

o FOP is a progressive disease and currently there is no cure.

o It has no ethnic or religious pattern.

o It does not affect a person’s intelligence.

o FOP affects approximately 1 in 2 million people worldwide.

o There are approximately 700 confirmed cases across the globe from a statistical estimate of 2,500.

o There are nearly 300 confirmed cases within the United States of America.

International FOP Association

The Big Toe Knows!

Malformed big toes are an important early sign of FOP that most doctors overlook.  Sienna’s pediatrician referred us to local orthopedic foot experts, who had been seeing her since birth.  They were unaware of FOP and never made the connection.  In fact, they recommended corrective surgery at 18 months.  We are conservative when it comes to invasive medical procedures and her toes didn’t appear to slow her down in any way, so we decided to wait.  Thankfully, our plan was to wait until she was old enough to make her own decision regarding surgery.  Surgery on her toes could have had tragic results, triggering ossification of her feet or beyond. 

It is our mission to drive awareness of FOP including the critical key image of the malformed big toe, so that other patients can be diagnosed early and surgery can be avoided.  It is our goal to have a flier up in every pediatrician’s office, and potentially in every ultrasound technician’s office, so that children with malformations of the big toe can be immediately tested for FOP and begin preventive measures at birth.

FOP Background References

International FOP Association
Canadian FOP Network
FOP Action UK
Overview of FOP (UCSF Benioff Hospital)
Overview of FOP (How Stuff Works)
How Can A Genetic Mutation Cause Muscle to Turn Into Bone? (Scientific American, December 2, 2009)
A Few Hundred People Turned to Bone (The Atlantic Magazine)
Hear Dr. Kaplan speak about FOP facts, insights and treatment methods:
FOP Treatments (How Stuff Works)

Additional FOP References

2012 FOP Annual Report (Perelman School of Medicine, May 7, 2012)

Path to a Cure