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Fibrodysplasia Ossificans Progressiva Eric’s Diary VIII : Frozen for life

In short, James was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva) or ‘the Stone man’s syndrome’ (in this case ‘the stone boy’). 

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Fibrodysplasia Ossificans Progressiva play

Fibrodysplasia Ossificans Progressiva

At long last, I was on vacation.  I could not wait to let my hair down after such a stressful term.   I started with my video games – from FIFA to Grand Theft Auto (GTA). 

Eventually, I was tired of the monotony.  So, I decided to try something different this vacation ; everyday, I had resolved to read about a medical condition.  Through this culture, I have found out about a genetic disorder that I would like to share with you but things are going to be a little different this time – I am going to tell the story in my own way. 

READ MORE: Eric’s Diary VII: The little bubble boy

Don’t blame me because by now you should know that in as much as I hate following rules, I am also not a fan of monotony.   The story begins…

Frozen for life.

This is not a fairy tale.  However the characters in this story are completely fictional but the condition is not.   Marilyn and James couldn’t wait to outdoor their first child.

 They named him James.  James was their dream-come-true especially considering the fact that the couple had been trying so hard to get a child for many years.   Despite having malformed toes, James was a lovely baby.  

James overcame his first hurdle – the first breath (some people say it’s the toughest action for a baby).   There were other milestones that James was able to reach.  But before James turned 10, his body started behaving strangely.

At first, the doctor thought the condition was either cancer or fibrosis ( thickening or scarring of connective tissue as a result of injury) so a biopsy ( an examination of tissue from a living body in order to diagnose or investigate the presence of a disease) was ordered.  

However, this lead to more trouble because more biopsies lead to an increase in the growth of lumps.  James had a decreased range of motion in most areas including his mouth, which limited his speech and eating.  

First, his neck began to ossify (excess bones began to develop in his neck), then it moved on to his shoulder, arms and chest area.   The transformation was so rapid.  It was then that the doctor ordered a test that indicated high levels of alkaline phosphatase and bone-specific alkaline phosphatase. 

In short, James was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva) or ‘the Stone man’s syndrome’ (in this case ‘the stone boy’).  This is because the disease causes damaged soft tissue to regrow as bone (ossification). It’s like being imprisoned or caged by your own skeleton because it affects the range of movement hence the name ‘Stone man’.

Like I pointed out, this condition is a genetic disorder.  Unfortunately, it has no cure.  Woe betide the doctor who decides to remove the excess bone growth via surgery – he or she would end up aggravating patient’s plight because more bone growth would result. 

There is not much to do in such cases.  Even though this disorder is rare, it does not eliminate the fact that it happens.

Eventually, James literally froze because the only part of his body left (his feet) had stiffened up.  I do not need to imagine how it feels to be frozen for life nor do I need to imagine how it would feel like to be imprisoned by my own skeleton in order to know that it is a terrible and very uncomfortable situation.

All over the world, people have different kinds of disorders or diseases that may cause certain limitations. It’s all a matter of probability.  So if you were born with all the necessities for survival, there is no reason why you would be justified for giving up on life because there are many people with disorders who didn’t.

Author:

Naa Adzoa Adzeley Boi- Dsane

University of Ghana Medical School

naabd6161@gmail.com

Credit- www.adzeleydeluxy.wordpress.com

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