Medanese IT Geek, movie lover and (mostly) law-abiding citizen. Dreaming of cheap and easy access to ICT, healthcare and education in Indonesia.



Osteogenesis Imperfecta

Category: Miscellaneous,Thoughts — kamaruddin @ 12:46 pm

Have you heard of someone whose bones are very fragile and breaks easily for no apparent cause? Even swatting flies or putting pressure when you sit will cause them to break? No, it’s not Osteoporosis and it’s not the lack of calcium. The disease is called “Osteogenesis Imperfecta” (Brittle Bone Disease), one of many incurable diseases.

Osteogenesis Imperfecta is a genetic bone disorder that affects the body’s ability to produce collagen (either little or poor quality). Collagen is major protein in bone which provides mass and strength to the bone. It also builds the connective tissue of the body (imagine framework of building). People who suffer this disease have only little mobility, since sudden movement or pressure will break particular part of their bones.

I recall 5 months ago, my friend and I visited an unlucky 54-year-old father of 4 (not financially-capable family). He lay on his bed and *literally* had nothing to do than staring at his surroundings. He couldn’t even sit and could barely move his limbs. Remarkably he smokes :D He told us he had Bone Cancer and had it for several years. Before, he was a salesman (landed couple jobs earlier) and able to support his family.

“I was going to sleep that night. When I climbed onto my bed, all of the sudden I heard a crack at my right leg. It sounded like a broken cane “. He was rushed to hospital that night. He was (wrongly?) diagnosed having Bone Cancer by doctor in Medan. The doctor suggested an amputation. He then went to see another doctor and several traditional doctors only to find the “rare disease” is beyond their capabilities.

“I’ve been like this for several years. I don’t have any future,” he said. He talked to me while my friend was “interrogating” his wife. “My wish is being able to see the sun (again). Even if I couldn’t be cured, sitting on a wheel chair and only have 3 months to live. I wouldn’t regret it. Death is inevitable. You see, lying down like this, my kidneys are about to explode (smiling)” His wife is a (rarely-found) dedicated wife. She has taken care of his husband since the very first. When I ask her how’s his husband daily hygiene, she said “He defecated after he took medicine. I usually slipped rags below his hips and dragged it out after he’d done”

oi1.jpgSeveral foundations paid visit and provide some preliminary checks in hospital by X-Rays, Scannings or such. Afterwards no news/information from any foundation. It seems to me his disease is very severe. I was intrigue with the “bone cancer” the earlier doctor mentioned and refuse to acknowledge it per se. As far as my layman’s knowledge concerns, bone cancer though may defect/deform affected bone but it doesn’t break/weaken ANY bone just that.

Although bone cancer may weaken the bone it develops in, the bones do not usually fracture (break). People with a fracture next to or through a bone cancer usually describe a limb that was sore for a few months and suddenly became severely painful….

Bone Cancer Detailed Guide from American Cancer Society.

Take a look at the picture. His shoulder seems to deform and the same applies to his lower limbs. His legbone seems to flatten.

I greatly hope that this disease will have a cure soon (and also other incurable diseases as well). It reminds me of Measles. It’s deadly and considered incurable in the past. At the present, it’s just extremely rare.

Further reading:
Osteogenesis Imperfecta Foundation
University of Maryland Medicine

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1 Comment »

  1. Using Mozilla Firefox Mozilla Firefox on Windows Windows XP

    :) tulisan yang sangat bermanfaat!

    komplit dan aku bisa membayangkan betapa sedihnya bapak itu. kalau bertemu dengan orang seperti ini, rasanya ikut tersiksa. ternyata jadi manusia, ternyata tidak banyak hal yang bisa kita lakukan untuk orang lain.

    Comment by kakakina — 30/12/2008 @ 3:08 pm

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