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| Photo: Care For Rare Dumaguete |
We’ve seen it in posters in maternity clinics and hospitals. Our government has been actively campaigning to detect some of it through expanded newborn screening, but some mothers never understood the purpose of such a process.
Rare diseases can be a silent, deadly killer because only few understood how it attacks. There are over 6,000 rare diseases that affect over 300 million people worldwide. Each condition has an impact on everyday life, including the need for a daily care routine. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.
Despite all of these, rare diseases are also rarely talked about in the media. The issue has been neglected by significant media here and abroad. Organizations that lobby for more support and resources for the cause have been having a hard time for the past few years.
We asked some Cebuano members of Volunteer Youth Leaders for Health - Philippines, a collaboration of youth leaders and organizations in universities and communities throughout the Philippines, on why it is essential to talk about rare diseases.
Kayzel J. Maata, 19
BS Biology student
University of the Philippines Cebu
Building awareness about rare diseases is so important because this can truly help those who are affected. Rare diseases affect just a few individuals and pharmaceutical companies don't give much attention to developing treatments because they know that not so many people would need and buy them. Certainly, this is an unfair thing for patients with rare diseases. Thus, awareness should be raised to address their needs and so that care and treatments would be made available for them.
Lance Beniga, 19
BS Biology student
University of the Philippines Cebu
It is important to talk about rare diseases because these kinds of diseases are only known by few people. By that, pharmaceutical companies do not give that much attention about the cure because of its lesser reach. As members [of VYLH-Philippines], we believe that it is important to advocate for the care and needs of rare disease patients. It is hoped that through an information drive, the public will be aware of such diseases. And by that, pharmaceutical companies will be obliged to find such cure.
Gale Rizarri Enad, 20
BS Nursing student
University of Cebu
It is important to talk about rare diseases so that people will know that rare diseases exist. They should also have health care treatment and receive budget allocation for research similar to other more known diseases.
Marius Eldrid A. Bohol, 19
BS Nursing student
University of Cebu
We should talk about rare disease because it may significantly affect a person's well-being. The percentage may be very tiny, as it is rare, but we still need to talk about this because our future children might have this. This can affect anyone including the person reading this or their loved ones. Through talking about this concern in the society, we can inform, educate, and communicate the possible ways of providing care and lessening the burden of the disease among patient families in the community. With the simple act of talking about the rare disease, one may change a person's future.
Ma. Angelica Haictin, 19
BS Biology student
University of the Philippines Cebu
We should talk about these because our indifference is just as deadly, if not worse, than the actual rare diseases themselves. It's not a solution, but talking about rare diseases means acknowledging that there is a problem, and we need to do something about it.
Atthea Jane Lepiten, 19
BS Radiologic Technology student
Cebu Doctors University
Rare diseases only happen to one in thousands of children. Ironically speaking, it is rare but it should be tackled and talked by more people. The disease can kill a child on a whim without them even knowing.
Roda Gayle Rañada, 20
BS Chemical Engineering student
Cebu Institute of Technology - University
Rare diseases should be talked about because it is not much known especially to the common folk. People should know that they exist and be aware of the journey of the people that are affected by these. We should support and be there for them because their struggle is also our struggle, as well. I believe that we should not be ignorant of matters like these because we are part of a growing society that nurtures and cares for one another.
Claire Angelie Z. Sadicon, 20
BS Pharmacy student
University of San Carlos
Only a few people know about rare diseases. Often, people misunderstood and mislabeled them as "abnormal." Even with just this reason, it shows how important it is to talk about rare diseases or the people who have these diseases.
Patients with rare diseases also get neglected most of the time, and this is unfair because they deserve the same quality of care as any other patient. It is essential that these should be talked about because these things matter. As Dr. Tolar said, “It is easy to dismiss rare diseases as something that can never happen to you, to your family. But to the family impacted, it doesn’t matter that it’s a rare disease. It’s the disease that changes their life." (University of Minnesota, 2017)
Niño Jan Vergara Miole, 21
BS Nursing student
University of Cebu
As a nursing student, it is my advocacy to bring health-related matters to the forefront of societal endeavors to bring its awareness in the limelight. After all, health is a fundamental right, not a privilege. I believe that we can create a healthier Philippines if everyone has the desire to become active participants of their health.
Talking about rare disorders isn't for show. It transcends superficial discussions and elevates the bar of competency of mothers in improving their care to their children. It transformed them to become empowered individuals to take action, and that is the cornerstone of having a healthy life. Rare disorders are not taboo. Be open to sharing your rare, and show that you care.
Klein Rowen N. Cantiveros, 25
Nurse
Department of Health Region VII
It is relevant to talk about rare diseases to increase awareness. Aside from that, people need to know that these cases are present and are left untreated due to poor financial support. Also to give hope to families that they are not alone in this battle and that there are people willing to help them.
Neil Christian General, 24
Faculty Member
University of Cebu
It is very important for us to talk about rare diseases because these are the diseases that no one, or only a few, cares about. We need to raise everyone's awareness on these conditions as the treatment and medicines for these conditions are normally very expensive. And, on a business standpoint, pharmaceutical companies cannot earn much from formulating drugs for these diseases as there is no enough demand. As such, there is a need for us to support the families of those affected and in a way, by being their voice.
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The youth have produced significant contributions throughout the years, but they are often neglected because of their age. The youth may be judged inexperienced and naive, but if society will listen to their suggestions, everyone can learn a lot from them.
As cliche as it may sound, but the youth indeed is the hope of the nation. The people of yesterday should listen to the people of today because the future does not only rely on their actions. Future generations will also carry the burden of the mistakes being done today.
Perhaps, it is time to listen to them again!
Written and compiled by
Maurice Jitty Villaester
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Maurice is a Master of Development Communication student via distance learning from the University of the Philippines Open University. A native of Baril, Cebu, he joined VYLH in 2018 as part of Batch Hayaw.
Ed RPascual
