DISTURBING RARITY REALITY!


http://wereblog.com/12-year-old-boy-with-a-rare-condition-with-his-head-hang-180-degrees

This is one of the reasons why my blog, Special Persons are People, Too! got conceived.

It’s not much really as I have failed to maintain it thinking it was a futile attempt at publicizing what my thoughts were regarding things, other special persons, and my pathetic quest to know more about my congenital defect. I did not have the absolute clarity as to the purpose of my putting up a blog. I felt it was useless; and my thoughts were: ‘Who am kidding? What in the world was I thinking putting up a blog nobody wants to read? To think I’m not an accomplished writer! Who cares about things like this?’

After several years of hiatus, I finally found better motivations not only to keep my blog afloat, but above all, to make something out of it as an instrument in service of humanity. On top of writing and sharing my thoughts and that of others’, I shall try to promote better understanding and awareness about us as God’s special creatures, to disseminate information as to the legitimacy and morality of our rlghts and privileges as also members of the society who ought not to be discriminated, oppressed, persecuted, looked down upon, bullied, and deprived of our basic needs having been borne to a society that should respect and celebrate those who are ‘slightly different’. It’s gonna be one tough journey; but we all have to start somewhere.

I pray for wisdom and resources for whatever purpose The Universe has drafted and designed for me.

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ADAMS-OLIVER VS AMNIOTIC BAND SYNDROME


Special people, like the mentally retarded and the physically disabled, in the olden days, were considered second class citizens who ought to keep out of sight.  Despicable and shameful, they were treated like animals, left to rot in oblivion to live out their lives in misery and suffering.  Whether they are indeed accidents of nature, borne of the scourge of  the gods, or some kind of genetic anomaly, one thing is for certain:  it’s not their fault how they turned out to be.

It has been a long time that I have been messing with the web, but it never occurred to me to seek out people with the same condition, or to even just research about it. Having been born with a congenital defect, at 37 years old, it was just last week that I decided to explore the world where one-half of me is an endemic inhabitant.

Initially, I surfed, read, followed links, to no avail.  My oddity, so to speak, cannot be found. Images, images, images- my eyes watered and I burnt candles for nights-but, nada. The gross and the macabre were in front of me (thank God I only have this kind!);  my heart broke to see worse persons than I am.

Browsing for images yielded no positive result, so I turned to reading until my eyebags got swollen and my eyes bulged like burbots‘.  It’s so elusive- there must be something! What, I’m not even among the categories and types? Later, I realized that I had a hard time because I wasn’t using the right tags.  But how could I, since I myself was at a loss as to what my deformity was called like!

Finally, I got to Adams-Oliver Syndrome and then eventually to Amniotic Band Syndrome.  I could fit in to either of them, but I still need more time to delve deeper.  One fact, though;  whichever syndrome I get to ‘fit in’, I am the only one with this kind of foot defect.  For, NO TWO CASES ARE EVER ALIKE.

Consequently, I will be spending more time learning about my deficiency.  Prior to last week, I’ve never encountered both syndromes before.  I guess I didn’t really give much thought to my defect as much as I should have, in my feeble attempt to ‘belong’ with the masses. Nevertheless, I’m grateful for having had such understanding family and friends to have had the chance to be considered ‘normal’ in spite of what I truly am.

For that, I am very grateful;  and I feel truly blessed.