Rare disease that turns one into ‘human mannequin’

jarvis_mannequin_disease660This is one story worth sharing, if only for the knowledge and awareness of it.

Life to some is already not fair, but more so if one is afflicted with a rare disease like 3-year-old Jarvis Budd of Australia.

Jarvis has been diagnosed to be suffering from fibrodysplasia ossificans progressiva, or what is known as “human mannequin disease.”

It is a disorder that causes muscle tissue and connective tissue to gradually be replaced by bone, forming bone outside the skeleton and restricting movement.

How does this happen?

According to experts it could happen even in minor fall or injury when people having this rare disease run the risk of their joints seizing uncontrollably and triggering abnormal bone growth, which forms outside the skeleton that eventually becomes a second skeleton.

What is incredible, if not surprising, about this disease is that the heart, the eyes and the brain do not get affected. Those suffering may be imprisoned in their own body but they are mentally alert.

Jarvis is one of 13 people in Australia diagnosed with the condition. According to the National Institutes of Health (NIH), the rare disorder is believed to occur in only about one in two million people worldwide.

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