The Official Publication of Volunteer Youth Leaders for Health - Philippines

Tuesday, May 22, 2012

I am Rare. I am Limited.


Written by Gian Carlo Abellana, RN*

It has been two years now since we huddled the stress, deadlines, busy schedules and less night life in college. I can barely recall sleeping for an hour and then prepare myself for another hectic day. A lot of people say that college life is full of  twists and turns- a great roller coaster ride.

One thing I would not forget when I was still in college is being part of the pioneering members of the Volunteer Youth Leaders for Health- Philippines (VYLH-Philippines). The said organization aims to mobilize youth towards health advocacies and among these are: Newborn Screening, Folic Acid Supplementation Campaign, and Rare or Orphan Disorders. VYLH is a network of leaders from different youth organizations based in universities and communities in the country. As part of the network, I was able to organize an information drive amongst my fellow students, imparting them awareness to such health issues in our country today. Remarkably, I did gained support from my classmates, friends, family, supervising clinical instructors, program coordinators, program dean and the rest of the populace in my university with my vision as a VYLH member.


Before I left the doorsteps of my Alma Mater, I wanted to leave a legacy which I can bring about change and prove that as young as we are we take part with different health dilemmas in our society.
In January 2010 “ I AM RARE, I AM LIMITED” – A Panel Discussion on Rare or Orphan Disorders was organized. After being rescheduled due to the cancelled flight of our keynote speaker from Manila because of a tropical storm, nothing beat us for this to push through the second time around. The event with the theme: “ A pathway to support, resources and hope” was attended by a number of students and faculty members . Ms. Aster Lynn Sur, RN from the Clinical Genetics Unit of the Institute of Human Genetics, National Institutes of Health of the University of the Philippines- Manila (IHG, NIH-UP Manila) graced the occasion as keynote speaker.

 
According to the Philippine Society For Orphan Disorders, Inc. (PSOD), which is also a VYLH partner, children born with rare disorders may appear normal at birth, only to develop problems later in life. Rare or orphan disorders are conditions that affect less than 1 in 20,000 individuals. They are life threatening, progressive, disabling conditions that require multidisciplinary care. The lack of understanding of these disorders makes these children at risk for serious consequences due to delay in and sometimes incorrect diagnosis.

Other than the awareness and knowledge brought by the said event, it also helped us realize the thought of equal access to health and social services to those affected children. The whole University is in full support for the signature campaign for a proposed law to be passed to support those children in aiding their needs. And as evidence for the great success of the “I AM RARE, I AM LIMITED” panel discussion, it has been awarded as Best Seminar Design for 2010 with undeniable good feedbacks from others.

As I scale on the new heights and letting my light shine to the real world of life, I must say that my experience as a member of VYLH-Philippines helped me a lot in different aspects of my personality and whole being. There may be a lot of trials and criticism along the way by people who don’t believe in our credibility, but that certainly made us stronger and continue to fight back the battle. I may not be practicing my profession as a nurse right now, but it’s not all about that, it’s how you live your life and touched the lives of others committed to serve with passion.

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*Gian Carlo Abellana is a licensed nurse and graduate of the Father Saturnino Urios University (FSUU) in Butuan City, Agusan del Norte. At present, Gian is a Customer Account Executive at Convergys Philippines Inc. - Cebu. 

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