Diagnosis

Turned in Toes means Check for FOP! 

Almost 90% of all cases of FOP are initially misdiagnosed. Those living with FOP often suffer serious trauma or injury as a result of the initial misdiagnosis and this accelerates the progression of the condition.  This CAN be prevented at a glance.  

Fibrodysplasia Ossificans Progressiva (FOP) is so rare that few medical professionals have encountered it.  Oliver was diagnosed just after his first birthday, following multiple investigations and undergoing neurosurgery.  Luckily, Oliver had medical professionals who then drew the connection between the tumor like lumps forming and his "turned in toes".  This early diagnosis (by FOP standards) undoubtably prevented Oliver from being subjected to more tests that would have likely caused major FOP related fallout and rapid progression.

Oliver was lucky!  Many are diagnosed wrongly (often diagnosed with Cancer) and undergo treaments, biopsies or further investigations, all of which accelerate FOP progression.  One extreme example comes from one of Oliver's FOP friends, Ashley, whose misdiagnosis resulted in the unnecessary amputation of her arm at the shoulder. She was just 3 years of age!  For another of Oliver's friends the misdiagnosis resulted in years of chemotherapy, while others have had to have biopsies, operations and experiemental treatments. All of these make the condition worse! 

The frustration is that the diagnosis is simple.  "Turned in Toes" or malformed toes in medical terminology is an immediately visible indication of FOP.  Oliver's toes were even visible (or rather were not) on an early ultrasound scan before he was born.  At the time, of course, we did not know what it meant.  Malformed big toes, together with tumor like swellings, means with almost 100% certainty that the diagnosis is FOP.  Confirmation is a simple genetic test - a pin prick or a swab taken to confirm.

Medical professionals, please look at these pictures and Remember the Toes!  At a glance it could save a person with FOP from years of trauma.  Turned in Toes means Check for FOP! It is so simple.

For those interested in learning more about the FOP diagnosis (and the outcomes from misdiagnosis) please download and read the files below or visit the IFOPA web site for a more comprehensive medical description.  You can also contact us and we can provide further information.

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PDF icon Medical Diagnosis409.93 KB
PDF icon Medical Missdiagnosis and Effects388.28 KB

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