The Preterm Problem (2)

Health Promotion Update No. 3 – Series 2012
Health Promotion and Advocacy Working Group
World Prematurity Day Primer 

The March of Dimes Infographic
Premature Births: Crisis, Care and Prevention

Reformatted from the original Infographic by March of Dimes (http://bit.ly/VyTqLK)

Key points presented:

• Number of premature births worldwide.
• Number of premature deaths in every 30 seconds.
• Childhood (under 5) mortality rates brought by AIDS, Malaria and Diarrhea as compared to deaths due to premature birth.
• The survival gap between low- and high- income countries
• Percent of preventable deaths (even without intensive care)
• Ways to prevent the increase in premature births:
• Raise awareness
• Educate girls and women
• Educate front-row workers
• Equip clinics
• Fund research

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The Preterm Problem

Health Promotion Update No. 3 – Series 2012
Health Promotion and Advocacy Working Group
World Prematurity Day Primer

Premature birth means a baby is born too early. Babies aren’t fully developed until at least 39 weeks of pregnancy. It is known that the development of the brains, lungs and eyes occur in the last few weeks of pregnancy. Worldwide, one baby in ten is born premature: Every year, about 15 million children are born too early.  Thus, preterm babies represent the largest child patient group and their number continues to increase (1).

In order to promote awareness about preterm births, as well as the problems and risks on the development of the premature infant, various international organizations such as the March of Dimes and European Foundation for the Care of Newborn Infants (EFCNI) have declared November 17 as the World Prematurity Day.

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A Day for Saved Babies

Ryan John Pascual (NCR-South Luzon), Ramzy Nuique (Visayas), Robin Charles Ramos (Mindanao)

"Saved babies" or the children with a genetic condition detected through newborn screening and consequently saved from death and mental retardation upon receiving the right and continuous treatment, were gathered in Quezon City, Dumaguete City and Davao City for the annual Reunion of Saved Babies. The event was organized by the respective Cluster Newborn Screening Centers (National Institutes of Health (NIH), Visayas, and Mindanao) in order to have a thanksgiving celebration with program partners, stakeholders, and beneficiaries for another year of continuous promotion of the government's newborn screening program.

The Philippine Newborn Screening Program supports the United Nations' Millennium Development Goal (MDG) 4 - reduction of child mortality.

Reunion of Saved Babies Visayas

Reunion of Saved Babies NCR-South Luzon

Reunion of Saved Babies Mindanao

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Understanding MSUD (Maple Syrup Urine Disease)

Health Promotion Update No. 2 – Series 2012
Health Promotion and Advocacy Working Group

Do you know that the newborn screening panel of disorders has been raised from five to six? 

Last May 2012, the Advisory Committee on Newborn Screening of the Department of Health approved the inclusion of Maple Syrup Urine Disease (MSUD) to the newborn screening panel of disorders. Its incidence rate which is higher than PKU or Phenylketunuria was one of the prime considerations for this move. According to the Newborn Screening Reference Center, there have been 101 cases of the disorder since 1992, and out of this number, only 26 are living.

Is there any change on the cost of NBS?

The Committee resolved that the offering of the additional test to all newborns will be done without any additional cost. Still, the newborn screening fee will be based on the maximum allowable cost for the NBS collection kit (filter card) and the maximum allowable service/collection fee by the health facility (50 pesos). The current NBS fee ranges from 550 to 600 pesos, as mandated by law. 

FAQs about Maple Syrup Urine Disease

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NBS Week 2012: A VYLH-Philippines Primer

For the past three years, VYLH-Philippines continues to uphold its commitment on one of its flagship advocacies – the promotion of public’s awareness on Newborn Screening  and its importance on saving babies from mental retardation. This is highly reflected in the activities conducted by the network in the national and local level. This primer aims to summarize the previous gains of the network related to its NBS advocacy, as well as present national and local plans for this year's NBS Week Celebration.

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Dr. Carmencita Padilla bags awards from DOST, UP

Dr. Carmencita Padilla
National Program Adviser, VYLH-Philippines
Chair, Department of Pediatrics, UP-CM
Director, NSRC-NIH, UP Manila
Executive Director, Philippine Genome Center
(Photo: IHG Website - ihg.upm.edu.ph)

 VYLH-Philippines celebrates the exceptional feats of Dr. Carmencita "Tita Menchit" Padilla, National Program Adviser, after becoming this year's recipient of  the following recognitions:

• Outstanding Science Administrator Award (Dioscoro Umali Medal) during the 2012 National Science and Technology Week organized by the Department of Science and Technology (DOST) last July 14, 2012.  

Excerpt from the NSTW Program: "In recognition of her outsanding leadership and commitment to uplifting the health and well-being of babies in the country as former Director of the Institute of Human Genetics, and present day Director of the Newborn Screening Reference Center at the National Institute of Health in UP Manila. Her initiatives in establishing the newborn screening project led to the enactment of a law on newborn screening which provides for the early diagnosis and treatment of babies with serious inherited conditions. She was instrument in setting-up the cytogenetics, newborn screening, biochemical genetics, and molecular genetics in NIH-UP Manila.  and new clinical genetic services at the Philippine General Hospital. Her expertise and research work has resulted in a large number of publications in local and international journals including some patents and copyrights."(1)

• Concepcion Dadufalza for Distinguished Achievement Award conferred by the University of the Philippines last September 18, 2012. The C. Dadufalza Award was established in June 2000 to honor individuals of distinction who has excelled in his/her craft, or who has contributed significantly to important causes in society. In a way, the award is also a means of remembering the selfless vision and values of the beloved UP professor. During the awarding ceremony, Dr. Padilla rendered a lecture entitled “Newborn Screening: Research to Policy Ideas, Successes and Continuing Challenges”. (2)

Tita Menchit, Congratulations! Your VYLH-Philippines Family is very proud of you! You are truly a great inspiration and role model for us Volunteer Youth Leaders!

Padayon, VYLH-Philippines.

References:

(1) UP Manila. Website Announcement.[link]

(2) InterAksyon. UP's Dadufalza lecture, September 18, UP Manila. [link]


Prepared by the VYLH-Philippines Advocacy and Health Promotion Working Group (AHPWG).

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Filipino studs conduct Folic Acid Awareness Talk

Written by Stanley Gajete
Batch I3, UP Los Banos
Originally published online UPI NEXT

Guest Speaker Ms. Marian Teresa Cuenca, RN of
IHG-NIH, UP Manila

LOS BANOS, LAGUNA - In celebration of the 29th year of existence, The University of the Philippines Los Banos Genetics Society (UPLB GeneSoc) steered a Folic Acid Awareness symposium for UPLB community. The event was held at Institute of Biological Sciences on August 13.

The symposium was part of the week-long celebration of with the theme “Folic Acid: A Vitamin for Life.” The talk aimed to encourage the UPLB community to take on folic acid awareness as an advocacy and to help impart the importance of Folic Acid to the students. This is according to UPLB GeneSoc President Rufus Thomas Adducul.

A pre-test was conducted before the start of symposium to determine if the participants have basic knowledge on Folic Acid. A series of sample images was also presented to test if some of those birth defects seemed familiar to the attendees.

The reality speaks for itself

Albeit the fact that only six out of 10 individuals are aware of the importance of folic acid, most Filipino women think that folic acid is for pregnant mothers only. This is according to Ms. Marian Theresa Cuenca, registered nurse and Birth Defects Surveillance Project coordinator from the Institute of Human Genetics - National Institutes of Health (IHG-NIH), UP Manila, who served as the keynote speaker. Ms. Cuenca is also the Volunteer Youth Leaders for Health - Philippines (VYLH-Philippines) NCR-South Luzon cluster secretariat.

A portion of the exhibit held at the lobby of the Institute of Biological Sciences.
Photo: The UPLB Genetics Society

Based on the data presented by Ms. Cuenca, folic acid, also known as Vitamin B9 is a water-soluble vitamin that can be found on different foods. It cannot be stored in the human body, thus regular intake of Folic Acid is necessary to replace it immediately.

Ms. Cuenca also claimed that the said vitamin helps in nourishing red-blood cells. She also cleared that folic acid is important for both men and women during their reproductive development years (ages 14 and above), to hamper chances of having birth defects in their offspring.

Folic Acid Sources

As emphasized by Ms. Cuenca, the different sources of folate, the natural form of folic acid, are chicken and beef liver, rice and cereals. A small amount of the said vitamin is established on some foods like breads, fruits, nuts and vegetables.

Ms. Cuenca also shared some options including some food supplements that are available
on different drugstores which are sold at an average of P9.00 per capsule. These supplements have enough amount of folic acid needed by every individual.

As an average, 400 micrograms (mcgs) of folic acid is needed by each one starting from age 14. On the other hand, for mothers who have already children with birth defects, an amount of 4000 mgs. are necessary to satisfy the appropriate amount required.

The core of the event

Based from Mr. Adducul, UPLB GeneSoc was part of the pioneering organizations in the Philippines who created Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines). It is a national collaboration of youth leaders from different organizations in universities and communities in the Philippines that focuses on three health advocacies: Folic Acid Awareness, Newborn Screening Promotion, and Rare Disease Support.

Because of these three main advocacies being promoted, UPLB GeneSoc intensifies its aim of bringing awareness among youth, especially to UPLB students. As such, a symposium on Folic Acid Awareness was conducted to continuously uphold its commitment of educating youth through this campaign, Mr. Adducul highlighted.

A total of 65 resident members constitute the organization.

Important message

Mr. Adducul shared in the symposium the importance of youth in nation-building. For him, “The burning spirit of volunteerism and the radiating energy of the youth would be a very essential instrument in attaining a healthier Philippines. Since the youth constitutes the largest part of the population, its role in shaping major advancement in a society is vital.” From these words, the organization and the speaker hoped that the participants who attended the symposium will carry on its goal of educating the people by sharing thoughts and ideas gained from the symposium.

After the talk, a post-test was done and leaflets which will serve as guide about the knowhow of the campaign were given to the participants.

Around 50 students from different colleges of the university attended the event.

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Congratulations, New VYLH-Philippines RNs!

With the release of the results of the June 2012 Nursing Licensure Examinations, VYLH-Philippines extends it warmest greetings to the following volunteer youth leaders who have succeeded to enter and join the ranks of healthcare professionals.

9333   DIMAYUGA, ELLAINE GUILLARTE, NCR-South Luzon (I3)

14321 LABAJO, LEO VERGEL SIAO, Mindanao (K4)

As announced by the Professional Regulation Commission (PRC) last August 23, almost half of the 60,895 examinees (23,823) passed the examination [1].  

In the 2010 and 2011 examinations, two volunteers were included in the top ten (10) positions namely Ms.  Jessa Lorraine Andalan (5th place, Dec. 2010) and Mr. Mark Ray Espinoza (6th place, Dec. 2011). Both were Xavier University/Ateneo de Cagayan graduates.


Reference:
1.Rappler.com.27,823 pass Nursing Licensure Exam; UST student tops list.Published online August 23, 2012. Accessed August 24, 2012. http://www.rappler.com/bulletin-board/11054-27,823-pass-nursing-licensure-exam


For correspondence: RPascual, RMBulseco

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VYLH Turns 3!

Written by Renz Marione M. Bulseco*

Last July 18, youth volunteers and advocates from different points of the Philippines celebrated the third founding anniversary of the Volunteer Youth Leaders for Health (VYLH) Philippines.

And the theme for the third anniversary of VYLH: V3 - Visible. Vigorous. Viral.

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Good Nutrition and Advocacy towards Disability Prevention

Health Promotion Update No.1 – Series 2012

Ryan John Pascual*

There is a Latin saying, “Omne Trium Perfectum”, which means that everything coming in threes is perfect. True enough, there are three national events that are celebrated every July – two of which are mandated by law, while the third, also the most recent, started only in 2009. During this month, concerned national and local agencies are tasked to spearhead and coordinate the observance of the annual National Nutrition Month and National Disability Prevention and Rehabilitation Week. The third event  is the founding anniversary of a unique youth network for health advocacy and promotion, Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines). Though instituted at different times and supporting different causes, it seems that these three events follow a distinct interrelationship.

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VYLH-Philippines Third Anniversary Message from the National President

Greetings and salutations!

Happy Anniversary, Volunteer Youth Leaders for Health - Philippines! As we celebrate another year full of passion, commitment, and service to the advocacy of our organization and as we continue to expand the network of informed, organized, and mobilized youth, I would like to extend my heartfelt gratitude for all those who have helped us achieve our goals. The UP Los Baños Genetics Society who has initiated the organization's existence together with the Institute of Human Genetics - National Institutes of Health, UP Manila; the Department of Health and different Centers for Health Development (CHDs) all over the Philippines; the Newborn Screening Reference Center (NSRC) and Newborn Screening Centers (NSCs); our advisers -"titos, titas, ates and kuyas" for their love, faith, trust and understanding; support groups and advocacy partners such as the Philippine Society for Orphan Disorders (PSOD); school and community affiliates; and for all those who have made VYLH-Philippines possible.

We are indeed very privileged to be given the chance to learn and experience much. May we continue to keep the fire burning as we move forward another chapter that awaits us and the many great memories that are to come. May we be able to do more, give more and share more.

To all VYLH-Philippines members, on behalf of all the officers and regional representatives, allow me to greet all of you a Happy Third Anniversary! Thank you and more power!

Daghang salamat!

Christian Emmanuel "Kuya Emman" P. Enriquez RN
VYLH-Philippines National President

2012-2014

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One for VYLH: The Second National Congress

Written by: Aple Dowanie Tadlas, RN*


(IN PRESS - NEWBORN SCREENING NEWSLETTER)

The Volunteer Youth Leaders for Health-Philippines network has finally made its way to expansion, growth and perpetual commitment as it celebrated the 2^nd VYLH National Leadership Congress last June 2-4, 2012 at the beautiful Island Cove in Kawit, Cavite with the theme: One Heart, One Vision, and One Goal in Sustaining the VYLH Commitment to Servant Leadership.

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Confessions of a Volunteer

Written by Zapphire Zamudio*

Three years and beyond: How it was and how it is now for the Volunteer Youth Leaders for Health

What began as a half-hearted attendance to a forum that I knew nothing about has now turned into a full-blown advocacy filled with much inspiration, passion and dedication. Starting with zero idea of what Folic Acid, Newborn Screening and Orphan Disorders are all about, I now readily face a community to increase their awareness of these three important matters.

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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.

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NBS ang Sagot! – Happy Feet partners with VYLH-UP Los Baños for NBS Advocacy

Written by  VYLH-Philippines UP Los Baños*

The Campaign Logo

With the presence of VYLH-Philippines at the University of the Philippines Los Baños, a group of senior BS Development Communication (DevComm) students was inspired to  develop a communication campaign for pregnant mothers of Barangay Mayondon, Los Baños, Laguna. The said communication campaign was part of the requirements in DEVC 180 (Communication Campaigns and Programs).

After being interested to the Newborn Screening Campaign of VYLH-Philippines, six DevComm students in the person of Peter del Rosario, Genie dela Cueva, Claire Anne Diosio, Keerleejohn Estabillo, Arjelyn Jose, and Minji Na asked the assistance of Ms. Gessa Ramos, VYLH-UPLB Coordinator and VYLH Committee Head of The UPLB Genetics Society. Their group, as well as their campaign, was named Happy Feet in order to remind how newborn screening is done and to emphasize that the babies are the real beneficiary of the campaign.

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A Humble Contribution: Advocacy into Policy

Written by Stephen Bryan Bongcaras* - VYLH-Philippines Bohol

RARE. The best word that I could use to describe the most recent milestone that I have achieved as a Volunteer Youth Leader (VYL) for health.

Just a brief history: I am Stephen Bryan Yu Bongcaras. An incoming senior student of Holy Name University, Tagbilaran City, Bohol taking up Bachelor of Science in Nursing. Last July 2010, I got a RARE chance of being chosen to represent our university for the VYLH Visayas Island-wide Camp.

"A RARE Advocate" that is how people call me in my province every time I try to lobby the advocacy of the organization since they can't believe that a volunteer-advocate like me is existing, and an organization such as VYLH-Philippines exists too! I honestly had a hard time in pursuing similar activities done by other volunteers in their area. I just wish I have someone standing with me in all efforts that I do for the organization.

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A Moment To Remember

Written by Christine Querubin*

This post is a story about a series of events that happened in one unforgettable day in the eyes of a volunteer.

It’s March 24, 2012. I woke up around 3:30 and was uber excited to join and meet the participants for the Reach for the Sky 2, a project of the group Photography with a Difference (PWD). 

05:27am- A Long Day Ahead

Our rendezvous was at the Megamall Bus stop where I got to meet the all-hyped up kids excited for what awaits them as the sun rises today.

Ate Yon from the Philippine Society for Orphan Disorders Inc. (PSOD) oriented me about my task as a volunteer for PSOD, a beneficiary organization in the event. I would be one of the marshals who would accompany the six beneficiaries from their organization as they are about to experience their very first plane ride and “reach for the sky.”

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VYLH, NSCs celebrate Araw ng Buntis 2012

Written by Ryan John Pascual, Marian Cuenca, RN , Anna Leah Millares, RN, and Jasper Jover, RN

 

In celebration of the National Pregnant Women’s Day last March 10, VYLH-Philippines in partnership with Newborn Screening Center – NIH, Visayas and Mindanao joined the Philippine Obstetrics and Gynecological Society (POGS) in their “Araw ng Buntis” activity with the theme “Maabilidad na P-nay, Malusog na Nanay”. This annual event is pursuant to Presidential Proclamation 569 which was signed in 2004.

VYLH-Philippines was able to participate in three key locations nationwide – Cuneta Astrodome, Pasay City; Robinsons Iloilo, Iloilo City; and Ateneo de Davao University – Grade School Campus, Matina, Davao City. Hundreds of pregnant women in these key locations were able to attend the said event. POGS was kind enough to provide a booth for VYLH-Philippines where volunteers were able to present and distribute information and promotional materials on the importance of Folic acid supplementation in the prevention of birth defects, and Newborn Screening. A signature campaign for the enactment of a Rare Disease Act was also done during the event. 

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Baby Making 101: A Personal Touch of Empathy for Babies with Rare Orphan Diseases

Written by Joan Mae Barredo*

Naughty grins underline the faces of the participants upon hearing the activity’s title. Various side comments here and there are evident in the venue for about, say, 30 seconds or so. And then, 30 minutes after, what remains is that emphatic look of compassion in their eyes.

Baby Making 101 as springboard

Baby Making 101

In connection to the various advocacies of Volunteer Youth Leaders for Health [VYLH] Philippines, especially on Newborn Screening and Rare Orphan Diseases, Baby Making 101 activity is one good avenue for health representatives to level-off the participants. This is to serve as a launch pad for processing the experience-base advocacy dissemination event.

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Promoting NBS, Rare Disorders to High School Students

Written by Ryan John Pascual
Pictures from VYLH-Philippines Volunteers

In the continued service and passion to the advocacy, VYLH-Philippines volunteers targeted high school students and teachers as the recipients of their information, education and communication (IEC) campaign activities on newborn screening (NBS) and rare disorders during the First Quarter of 2012. Among these activities were the Genetics Camp of The UPLB Genetics Society and "Schools for Rare" Campaign of VYLH-Philippines.

Schools for Rare at Luray II National High School in Toledo City, Cebu

High school students, being in their formative years, are viable partners in the advocacy since it is during the secondary level of education where students start to build their career path and pick the fields in which they will participate in the future. Imparting the advocacy allows students to be conscious of the health concerns that they will encounter as parents and leaders in the future. These students are also highly capable of disseminating information among their peers, friends and family.  Aside from students, engaging secondary school teachers to advocate our health concerns allows the integration of these health topics in their future classroom discussions.

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Caring for Rare - A New Dimension of People Power and Empowerment

Notes on the PSOD Psychosocial Support Workshop for Parent Members

Written by Ryan John Pascual*

It has been 26 years since People Power came into history, yet the essence of Filipino People Power remains true to our spirit. A testament to this is the work of the Philippine Society for Orphan Disorders Incorporated (PSOD) and its network of rare disease support groups.

For the past years,  PSOD has continuously served as the primary coordinating body, advocacy network and support group of patients with rare disorders. PSOD aims to increase the public’s awareness on rare or orphan disorders which are long-standing, life threatening, progressive, disabling conditions that require multidisciplinary care. These conditions affect less than one in every 20,000 individuals.

In time with the celebration of the Third National Rare Disease Week, PSOD conducted a Seminar-Workshop on Mutual Psychosocial Support for Parent Members of PSOD last February 25, 2012 at the NIH Conference Room, UP Manila. The activity is part of a series organized by PSOD for Parent Members. The said series includes separate workshops on entrepreneurship, financial management and basic homecare skills.

Psychosocial support, generally, addresses the ongoing psychological and social problems of patients and their families. With this, the workshop aims to facilitate the exchange of experiences and determine the coping mechanisms or “pagdadala” of parents of children with rare disorders. The session was facilitated by Ms. Lyra Versoza, a Chemical Engineering graduate and active Pahinungod volunteer from UP Diliman who pursued her passion with a MA Psychology degree from Ateneo de Manila.  She is a seasoned facilitator of psychosocial support activities in several disasters, as well as in the conduct of trainings, retreats and counseling sessions to students, indigenous people and indigent youth.

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Primer to the Annual Rare Disease Week Celebration

Frequently Asked Questions (FAQs) on Rare Diseases and the Annual Rare Disease Week Celebration*

Rare but strong together

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