Diagnosis

Turned in Toes means Check for FOP! 

Please remember this as 90% of all cases of FOP are initially misdiagnosed resulting in serious trauma, injury and accelerating 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 being subjected to more tests that would have 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 that of one of Oliver's FOP friends (Ashley in America) her misdiagnosis resulting in the unnecessary amputation of her arm at the shoulder, she was just 3 years of age!  For another of Oliver's friends it resulted in years of chemotherapy, others have had biopsies, operations, treatments all of which make the condition worse! 

The frustration is that 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!  A a glance it could save a person with FOP years of trauma.  Turned in Toes means Check for FOP! It is so simple.

For those interested in more detail behind FOP diagnosis (and the outcomes from misdiagnosis) please download and read the files below or visit the IFOPA web site for more comprehensive medical information.  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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