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.

The program started with a short prayer lead by Ms. Yon Elcano. Afterwards, Ms. Lyra started to ask about the Filipino view on counseling and psychosocial support. This was further discussed with the activity on “pagdadala” which involved the identification of the problems and burdens of parents, the ways in which they cope with their problems, their source of strengths, and the means on how they relieve their emotions.

"Pagdadala - final activity output"

On the first part “Dinadala”, the parents were asked to identify their concerns to their children, relationships, emotions, finances and their own health.  The effects of emotional problems were also raised together with the personal reservations towards its release. This was followed by the “Tulay” segment where they identified the ways in which they cope with their problems. Among the responses gathered were prayers, sharing stories, time-management, hardwork, and participation to a support group. Ms. Lyra also highlighted the importance of sharing stories and continuing life with hope and positivism. The parents also identified their sources of strength such as their children, their family, co-parents, and God. Methods on how they could release stress and emotional burden were also demonstrated. These included deep breathing exercises and basic reflexology. Ms. Lyra suggested that inspirational and success stories; and basic reflexology tips should be compiled as a reading material for the PSOD members.

In her synthesis of the activity, Ms. Lyra noted that the whole activity teaches the essence of hope and inspiration (“pagtanaw ng pag-asa, pagkuha ng inspirasyon”). The workshop culminated with the back tapping and breaking of bread activity wherein the participants were asked to share about the things they are thankful of. The bread was shared by the group and eaten as a symbol of the blessing received and to be received. Ms. Karen Pañol of PSOD also gave a short closing message to the group. The group then enjoyed lunch while viewing the PSOD Theme Song Music Video which was timely released for this year’s Rare Disease Week celebration.

Enabling parents of patients to cope with psychological and social concerns is an important undertaking since rare diseases are both long-standing and challenging. Aside from an individual's perspective, enabling this function in a support group aids in the progress of services and exchange of experiences among members. In essence, addressing these concerns contributes to the fulfillment of the goal of providing the right to life and the right to quality life of Filipino children with rare diseases.

"Ang pag-ibig ko ay nasa Panginoon, sapagkat ipinagkatiwala niya sa akin ang isa sa kanyang mga pinakakamahal - ang aking anak." - from a mother of a Rett's disorder patient

"Maaring ang sakit ay bihira, pero ang pag-asa ay hindi bihira" - Ms. Lyra Versoza, workshop facilitator

"Ang kahinaan ng iba, ng mga kasama, ay nagtutulak sa akin para maging malakas para sa iba" - On their source of strength.

"Makitang nakangiti ang aking anak." -   On their source of strength.

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*Ryan John Pascual is an alumnus and the former Folic Acid Campaign Committee Head (VYLH-Philippines Committee) and Education Committee Head of The UPLB Genetics Society. He graduated with a BS Biology (Major in Plant Biology) degree in UP Los Baños. Ryan is currently a non-degree graduate student at the College of Public Health, UP Manila and the incumbent National President of VYLH-Philippines.