Monday, April 12, 2010
A face for PKD in the Philippines
It's almost a month now since former Philippine Budget secretary Emilia Boncodin passed away. She was widely respected as a good, honest and dedicated public servant, a model of professionalism and integrity which seems to be a rarity in Philippine government nowadays. I just learned she was a PKD patient.
Below is a link to an ABS-CBN report on Boncodin's demise.
Her life may be relatively short but she lived a full and fruitful life. Despite her condition, she continued to work. A good role model indeed for me and other PKD patients.
I just hope that her death could be a spark to bring to light awareness on PKD. I noticed that in the Philippines, there is still little awareness on PKD perhaps even among physicians and this is despite the fact that Autosomal dominant (ADPKD) is one of the most common life-threatening genetic diseases. It affects approximately 1 in 500 and it does not skip a generation. Perhaps many other Filipinos have this condition and yet, there are no local PKD groups that I know of.
Online or offline, I do not know of any local support group. Many local PKD patients may not be aware that they have it. Or if they are aware, they are still in need of a fellow PKD patient to walk with them in their journey to give them strength.
Without a supportive and "strong" companion, the journey is hard alright.
The meds alone are heavy on the pocket. Potassium citrate to alkalinize urine and prevent stones, antihypertensives, bicarbonate, calcium carbonate, allopurinol, antibiotics to treat or prevent UTI, B vitamins and iron.
The pain in the abdomen and flanks and the other symptoms is something else....The big abdomen...and other manifestations.
However, the journey becomes easier with supportive family, friends and other PKD patients.
The journey is worth taking seeing that some had made their own journey a fruitful one.
Such is the journey made by Madame Emilia Boncodin who now joins the ranks of well-respected and beloved departed public officials like President Magsaysay or Haydee Yorac.
Emilia Boncodin is just the face of PKD that Filipino PKD patients need.
*Classmates, friends, if you know someone with PKD, please let me know. Initially, I want to start an online PKD support group if not a plain group for PKD patients to gather online. Let them leave a comment or an email to this blog.