Friday, May 1, 2009

I'm an Idiopath, so what?

Now the right time has come. Today is definitely "Blogging against Disablism Day 2009"!

Oh yeah, I haven't forgotten it even though we were obviously living in a different time zones. I live somewhere here in the tropical sun-kissed city of Manila and there you are!

As I am planning to make a draft of it the day before, I don't know why it doesn't materialize. Maybe because I’m always been preoccupied by the happenings of the day, the noisy chattering inside the house, and my unpredictable health issues I’m experiencing from time to time.

It’s like going through a certain routine which I have no choice but I had to do it all over again.

In my recollection, twenty three years has past already. Counting down the days and the age doesn’t matter at times on how it all began. Sometimes, living with a disability can make your world stop to a certain pace in your life which you really don’t know how to pick up the pieces together and move on to a much better life you deserve in the first place.

Anyway, look at us. We manage to get up and make the most out from our own circumstances and situation with the help of our own families and with the community who embraces us and more often not.

The one I had is a rare genetic bone disorder called “Idiopathic Carpo-tarsal Osteolysis” or also known as “Idiopathic Multicentric Osteolysis”.

I was born like a normal child and as far as I can remember everything is normal. MD said it’s somewhat congenital which is while I’m still developing in my mother’s womb I already had these physical disorders and genetic defect that affected my physical development as I reached my puberty age and early adolescence. The word “idiopathic” explain it as a disease/disorder arising spontaneously or from an obscure or unknown cause.

Maybe its part of a genetic makeup caused some serious functional disabilities later on in my growing years up to my present condition. I’m always been aware that I’m not going to be mobile like an average abled-person does. Later on, it made me accept some of the things I can do and I cannot do.

August 2002. Fitting some hospital dress, before my first operation

Somewhere in September 2002. With Dr. Saguin removing the cast on my both knees.

Early April 2003. Closer look at the my operated knees while removing the cast.

June 2008. Preparing for my 3rd operation operation removing steel pins on the right knee. Sorry low quality photo.

June 2008.

Right after graduating from high school in 2004 and learning the use of the internet, I started looking out, researching some medical stuff in the internet anything that causes my tick and answers to those questions continue to unravel.

and this is what I had found out after all these years...

“Osteolysis(from the word “osteo” meaning “bones”) refers to an active resorption or dissolution of bone tissue as a part of an ongoing disease process.” – Wikipedia

“Idiopathic Multicentric Osteolysis” is a rare bone disorder. It is characterized by an extensive osteolysis, usually at the carpal and tarsal areas but other bones may not be involved.

-(You can read more here– SpringerLink –Journal Article)

“Idiopathic Multicentric Osteolysis” (IMO) is a rare disorder leading to extensive bone loss, most frequently in the carpal and tarsal areas. It is distinguished from Gorham’s massive osteolysis in the latter is unicentric and pathologically is associated with hemangiomatosis.

Table I. — Classification of idiopathic osteolysis according to Hardegger et al (15)

1. Hereditary multicentric osteolysis with dominant transmission
Between the ages of two and seven years, spontaneous pain and swelling begin in the hands and feet. Carpo-tarsal osteolysis occurs over the period of a few years.
Progression ceases normally in adolescence

2. Hereditary multicentric osteolysiswith recessive transmission
Similar to Type 1, but may be associated with severe generalised osteoporosis.

3. Non-hereditary multicentric osteolysis with nephropathy
Appears in childhood.
There is a gradual disappearance of the carpus with the tarsal
bones involved but to a less degree, and an association with proteinuria. Death occurs
usually due to renal failure and malignant hypertension.

4. Gorham’s massive osteolysis (Gorham-Stout syndrome)
Monocentric occurrence in any part of the skeleton may start at any age.
Normally “hemangiomatous” tissue is found in the osteolytic region. It has neither a hereditary pattern nor an associated nephropathy. The disease is benign and the osteolysis usually stops after a few years.

5. Winchester syndrome Autosomal recessive transmission.
Rare childhood carpo-tarsal osteolysis in association
with contractures, shortness of stature, skin lesions, corneal clouding and osteoporosis without nephropathy.

-(You can read more here– Idiopathic Multicentric Osteolysis: A case report and review of literature)

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