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Filipinos with rare muscle disease 'run' for public awareness, gov't support

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Anjo Bagaoisan, ABS-CBN News

<div class="embed-wrap"><figure data-feedback="fb:likes,fb:comments"><img src="http://sa.kapamilya.com/absnews/abscbnnews/media/2019/life/09/08/20190908-run-1.jpg?ext=.jpg"/><figcaption>Elizabeth Doco. <em>Anjo Bagaoisan, ABS-CBN News</em></figcaption></figure></div><p>MANILA -- It may have only been 500 meters, but Elizabeth Doco gave her all to traverse that distance even without her legs.</p><p>With a loved one behind her electronic wheelchair giving the occasional push, she earned a finisher&#x27;s medal for the shortest track of the &quot;Gilas Run&quot; in Pasay City on Sunday.</p><p>At 54, Doco has lived her entire adult life with muscular dystrophy, a disease that slowly weakens and eats away a person&#x27;s muscles.</p><p>It&#x27;s a condition already dictated by her genes, yet only manifest when she reached high school.</p><p>She managed to get her license as a physical therapist, but that coincided with the disease stranding her to a wheelchair.</p><p>This is Doco&#x27;s third time to join a fun run, but her first &quot;running&quot; for a cause close to her heart.</p><p>&quot;It&#x27;s not so much of a physical preparation but more of the spirit in us that we have to push on our advocacies,&quot; she said.</p><blockquote class="twitter-tweet"><p dir="ltr" lang="en">Among the runners are persons afflicted with muscular dystrophy, who participated in the 500-meter run.<br/><br/>The funds raised from the run will go toward building a halfway house for patients from the provinces who need to go to the capital for therapy. <a href="https://t.co/g4c9EAzNda">pic.twitter.com/g4c9EAzNda</a></p>— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) <a href="https://twitter.com/anjo_bagaoisan/status/1170476754038714370?ref_src=twsrc%5Etfw">September 7, 2019</a></blockquote><div><script async="" src="https://platform.twitter.com/widgets.js" charSet="utf-8" type="text/javascript"></script></div><p>Her group, the Muscular Dystrophy Association of the Philippines (MDAP), organized the run to raise money for a facility that would accommodate far-off, needy patients who have no place to stay in Manila during testing and therapy.</p><p>But for its members, the run is also their way to make more Filipinos aware of muscular dystrophy. </p><p>They also want to urge the Philippine government to recognize the still-incurable condition, which would open the door for more support to its sufferers.</p><div><strong>RARE DISEASE</strong></div><div class="embed-wrap"><figure data-feedback="fb:likes,fb:comments"><img src="http://sa.kapamilya.com/absnews/abscbnnews/media/2019/life/09/08/20190908-run-2.jpg?ext=.jpg"/><figcaption>Muscular dystrophy often leaves its patients in wheelchairs. <em>Anjo Bagaoisan, ABS-CBN News</em></figcaption></figure></div><p>Global statistics are as rare as the disease. Locally, the MDAP estimates tghat more than 200 suffer from the disease in the Philippines, or around 0.0002% of the total population. </p><p>Muscular dystrophy comes in at least 9 forms.</p><p>Most patients suffer from the types of muscular dystrophy that crop up in adulthood. </p><p>A smaller number consists of younger people with Duchenne muscular dystrophy, which often begins as early as 3 years old and primarily affects boys. </p><p>Many do not live long enough to become senior citizens.</p><p>Still, many more Filipinos could be undiagnosed with the disease, said MDAP president Michele Cathrine Sideco, one of the few race participants with muscular dystrophy who finished the longer 3-kilometer track.</p><p>Aside from few people knowing about the condition, Sideco lamented the cost of just having the disease detected.</p><p>Genetic testing to identify specific DNA mutations could reach P100,000, while the cheapest muscular biopsy test would cost P5,000.</p><blockquote class="twitter-tweet"><p dir="ltr" lang="en">The Muscular Dystrophy Association of the Philippines estimates more than 200 Filipinos suffer from the genetic disease, with more feared undiagnosed.<br/><br/>It hits various ages depending on its type &amp; results in progressive muscle weakness &amp; loss of muscle mass.<br/><br/>No cure exists yet. <a href="https://t.co/rGhNnkh2B7">pic.twitter.com/rGhNnkh2B7</a></p>— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) <a href="https://twitter.com/anjo_bagaoisan/status/1170484274492915712?ref_src=twsrc%5Etfw">September 7, 2019</a></blockquote><div><script async="" src="https://platform.twitter.com/widgets.js" charSet="utf-8" type="text/javascript"></script></div><p>It is worse for sufferers with low incomes and those in the regions who have no direct access to health care specific to their condition.</p><p>&quot;Marami sa amin hindi na nagagawang magpagamot,&quot; Sideco said.</p><p>&quot;Meron nga namamatay na lang, hindi namin natulungan. Gusto namin gawin, pero ano&#x27;ng magagawa namin?&quot; </p><p>(Many of us no longer get treatment. Some already died without any help from us. We wanted to, but how could we do it?)</p><p>This is why the group saw the need to build a &quot;halfway house&quot; for patients from the provinces.</p><p>MDAP estimates constructing one would cost P3 million to P5 million.</p><p>Aside from the fun run, which they hope to repeat next year, they have also been selling miniature houses made by members.</p><div class="embed-wrap"><figure data-feedback="fb:likes,fb:comments"><img src="http://sa.kapamilya.com/absnews/abscbnnews/media/2019/life/09/08/20190908-run-3.jpg?ext=.jpg"/><figcaption>These mini-houses for the halfway house fund sell for P200. <em>Anjo Bagaoisan, ABS-CBN News</em></figcaption></figure></div><div><strong>ATTENTION NEEDED</strong></div><p>The sufferers may be few, but any spotlight on their plight would go a long way, said MDAP treasurer Catherine Patricio.</p><p>Ultimately, they hope it would result in government programs that would subsidize their costs for testing, therapy, and even supplements.</p><p>&quot;Sana po, i-recognize din kami ng DOH na may ganitong sakit na existing sa ating bansa,&quot; Catherine said. </p><p>(We hope we would be recognized by the Department of Health that this disease exists in the country.)</p><p>They say recent measures such as the Universal Healthcare Act and the law mandating automatic health insurance coverage for Persons With Disability (PWDs) have helped.</p><div class="embed-wrap"><figure data-feedback="fb:likes,fb:comments"><img src="http://sa.kapamilya.com/absnews/abscbnnews/media/2019/life/09/08/20190908-run-4.jpg?ext=.jpg"/><figcaption>Michele Sideco and Catherine Patricio of the Muscular Dystrophy Association of the Philippines. <em>Anjo Bagaoisan, ABS-CBN News</em></figcaption></figure></div><p>Yet while they are thankful for the benefits already received by PWDs under the law, ignorance of their condition prevents them from enjoying these benefits at times.</p><p>&quot;&#x27;Wag lang po sana pang-senior citizen, kasi paano naman po kami na hindi namin alam kung dadating kami sa edad ng senior citizen?&quot; Patricio said.</p><p>(Do not just target senior citizens. How about us who do not know if we would even reach that age?)</p><p>Deco&#x27;s own condition has enabled her to empathize with her physical therapy patients.</p><p>&#x27;I know their pain,&quot; she said.</p><p>So while a cure is still out of reach, these people with muscular dystrophy said they would give their all to at least make the lives of fellow sufferers easier. </p>

Filipinos with rare muscle disease 'run' for public awareness, gov't support

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Filipinos with rare muscle disease 'run' for public awareness, gov't support

Anjo Bagaoisan,

ABS-CBN News

Published Sep 08, 2019 11:55 AM PHT

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Muscular dystrophy

Muscular Dystrophy Association of the Philippines

MDAP

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