Mom Aims to Put Up a Foundation for Helping Filipino Women With APAS and RIDFilipino women seeking information and help in battling APAS and other reproductive immune disorders had been steadily growing exponentially.
What really is the cause of APAS? Is it preventable? Why is there not much incidence in economically-challenged neighborhoods? Is it really non-existent there or the cases are just undiagnosed? Is the awareness about the condition enough? Why do we still see patients who are told that they do not have APAS, yet their tests show otherwise? And what happens when you have APAS, but don't have the means to have yourself treated? What now?
These thoughts hound me incessantly, especially since June is APAS Awareness Month.
Instead of hearing about month-long activities set to create awareness or help women with the condition, not many people even know about it or about the condition.
Antiphospholipid antibody syndrome (APAS) is one out of five different reproductive-immune disorders (RID), a set of autoimmune and alloimmune disorders that may cause women to have recurrent pregnancy losses or unknown infertility.
Many celebrities had opened up about APAS and their pregnancies. The increased awareness has brought many women — grieving mothers who suffered through numerous pregnancy losses, couples who have unknown infertility problems, and women who are looking for someone who would understand their plight, to name a few — to the All About APAS and RID Facebook Support Group. Our exponentially growing number led me to once again ponder on the questions that bothered me for a long time, questions that remain unanswered to this day despite my seemingly intensive research about the condition.
When I was diagnosed with APAS in 2013, it was the first time I heard about it. It was hard to find any information about it, just on abandoned blogs and most of the articles are from in vitro fertilization (IVF) centers abroad. It was frustrating. I was lucky to find the group. Somehow, meeting women who go through a similar journey gave me a sense of belongingness, a comfort that somehow I was not alone battling this depressing condition.ADVERTISEMENT - CONTINUE READING BELOW
Meeting women who go through a similar journey gave me a sense of belongingness, a comfort that somehow I was not alone battling this depressing condition.
Yes, having repro-immune disorders can be a cause for depression for many women (and couples). When I had my miscarriages, my life was put out of its orbit. My career was affected. My marriage was on a downward spiral. I questioned myself, and the self-doubt that this experience pounds on your heart is enough to make you go crazy. Losing one pregnancy after another without knowing the cause is disheartening. Knowing that it is your body attacking the baby inside your tummy is even more devastating.
That is why I was so thankful for the support the group that gave me hope that one day, I would have a successful pregnancy with the right medical treatment. And I did. After two heartbreaking miscarriages, I was able to finally hold my rainbow babies, Santiago, 3, and Lucia, 1. When I started this journey, I promised my immunologist that if I'd have a baby, I would dedicate myself to helping other RID warriors.
When I became an admin of the group, I was overjoyed that somehow, I'm doing something to make a little impact in this community that I had grown to love. When I joined the group in 2013, there were only over a thousand members. Today, we are close to having more than 7,000 members, and we continue to approve hundreds of requests from women who want to join every month. The community has been a safe space for women who had to go through the whole “a thousand pricks and needles” journey.CONTINUE READING BELOWRecommended Videos
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But there is a more significant desire that resides in my heart, an incessant voice that tells me that something bigger should be in place. Something that would hopefully go beyond the online community — beyond social media and down on the ground where we can reach out to where social media cannot — and educate more people about the condition.
Marami pang magulang na hindi magkaanak ang pwede nating mabigyan ng kaalaman na may ganitong karamdaman na sanhi ng sunod-sunod na pagkakunan. Marami pa tayong pwedeng mabigyan ng pag-asa na pwede itong gamutin at maari sila ay mabigyan ng anak na kanilang pinakainaasam-asam.
I say this coming from a place of experience.
Several years ago, I handled the advocacy projects of a company I worked for and met amazing people from different people with disabilities (PWD) organizations such as Down Syndrome Association of the Philippines, Parent Advocates for Visually Impaired Children, Autism Society of the Philippines and the like. From them, I have learned two things: first, the importance of spreading awareness about the condition, and second, early intervention.
I personally believe that putting up a formal foundation is critical to make bounds and leaps in promoting awareness and creating projects that would benefit the APAS community.
I personally believe that putting up a formal foundation is critical to make bounds and leaps in promoting awareness and creating projects that would benefit the APAS community. A foundation dedicated to APAS and RID can take the lead in:
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- Raising funds to organize lay forums across the country and to invite medical experts to enlighten women and couples RID.
- Mobilizing dedicated groups to lobby healthcare programs, primarily catering to those who are financially challenged, and conducting studies that could help us understand and manage these disorders better.
- Conduct awareness campaigns to help the public know and understand about this condition, so they'd be more sensitive when dealing with couples who do not have children yet (this is another topic for another time)!
It's a dream, but it seems too far off as of now because based on my initial research, one needs to have a million pesos to put up a foundation, which I found ridiculous! You can put up a corporation with minimal capital, yet for a foundation, there needs to be Php1M on its books.
Upon further probing, this requirement was to discourage fly-by-night organizations posing as charitable institutions and prevent people from abusing the privilege and use foundations as money-laundering channels and for tax exemption purposes.
If this is to protect money launderers and terrorists, wouldn’t they have the resources to actually put up a foundation more than a group of concerned citizens who just want to do some good in this world? Shouldn’t the government audit those foundations with too much money? I don’t know, and I am yet to fully understand this law as I speak with my legal counsel.
But rules are rules, and I have to comply. But then again… a million pesos?! Where do we get a million pesos to make this dream a reality? What about groups like us who just really want to make a difference in the world, sans politics and selfish reasons or deceptive practices?
For now, we are grateful that we can mobilize two lay forums with zero budget through the help of Reproductive Immunology Council of the Philippine Society of Asthma, Allergy, and Immunology (PSAAI). The first one was in Quezon City in August 2018 attended by around 200 couples and graced by top immunologists and perinatologist in the country and the second installment, on September 1 in Cebu. (To register for this free event, please go to www.bit.ly/RIDCEBU)ADVERTISEMENT - CONTINUE READING BELOW
There is still so much that we can do. Until then, we, the admins of the online support group, will do the best we can in helping other couples with the resources that are available to us today. I can only pray that one day, there will be a light at the end of the tunnel.
Balot Amechachura-Del Rosario will be launching a book before the end of the year, outlining her struggles with APAS. Part of the proceeds of her book will be pledged to setting up of the foundation that she is dreaming of. To get updates on this cause, visit her blog Chronicles of the Happy APAS Mama.
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