Filipinos with rare muscle disease 'run' for public awareness, gov't support | ABS-CBN
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Filipinos with rare muscle disease 'run' for public awareness, gov't support
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

MANILA -- It may have only been 500 meters, but Elizabeth Doco gave her all to traverse that distance even without her legs.
MANILA -- It may have only been 500 meters, but Elizabeth Doco gave her all to traverse that distance even without her legs.
With a loved one behind her electronic wheelchair giving the occasional push, she earned a finisher's medal for the shortest track of the "Gilas Run" in Pasay City on Sunday.
With a loved one behind her electronic wheelchair giving the occasional push, she earned a finisher's medal for the shortest track of the "Gilas Run" in Pasay City on Sunday.
At 54, Doco has lived her entire adult life with muscular dystrophy, a disease that slowly weakens and eats away a person's muscles.
At 54, Doco has lived her entire adult life with muscular dystrophy, a disease that slowly weakens and eats away a person's muscles.
It's a condition already dictated by her genes, yet only manifest when she reached high school.
It's a condition already dictated by her genes, yet only manifest when she reached high school.
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She managed to get her license as a physical therapist, but that coincided with the disease stranding her to a wheelchair.
She managed to get her license as a physical therapist, but that coincided with the disease stranding her to a wheelchair.
This is Doco's third time to join a fun run, but her first "running" for a cause close to her heart.
This is Doco's third time to join a fun run, but her first "running" for a cause close to her heart.
"It's not so much of a physical preparation but more of the spirit in us that we have to push on our advocacies," she said.
"It's not so much of a physical preparation but more of the spirit in us that we have to push on our advocacies," she said.
Among the runners are persons afflicted with muscular dystrophy, who participated in the 500-meter run.
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. pic.twitter.com/g4c9EAzNda
— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) September 7, 2019
Among the runners are persons afflicted with muscular dystrophy, who participated in the 500-meter run.
— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) September 7, 2019
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. pic.twitter.com/g4c9EAzNda
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.
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.
But for its members, the run is also their way to make more Filipinos aware of muscular dystrophy.
But for its members, the run is also their way to make more Filipinos aware of muscular dystrophy.
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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.
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.
RARE DISEASE
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.
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.
Muscular dystrophy comes in at least 9 forms.
Muscular dystrophy comes in at least 9 forms.
Most patients suffer from the types of muscular dystrophy that crop up in adulthood.
Most patients suffer from the types of muscular dystrophy that crop up in adulthood.
A smaller number consists of younger people with Duchenne muscular dystrophy, which often begins as early as 3 years old and primarily affects boys.
A smaller number consists of younger people with Duchenne muscular dystrophy, which often begins as early as 3 years old and primarily affects boys.
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Many do not live long enough to become senior citizens.
Many do not live long enough to become senior citizens.
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.
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.
Aside from few people knowing about the condition, Sideco lamented the cost of just having the disease detected.
Aside from few people knowing about the condition, Sideco lamented the cost of just having the disease detected.
Genetic testing to identify specific DNA mutations could reach P100,000, while the cheapest muscular biopsy test would cost P5,000.
Genetic testing to identify specific DNA mutations could reach P100,000, while the cheapest muscular biopsy test would cost P5,000.
The Muscular Dystrophy Association of the Philippines estimates more than 200 Filipinos suffer from the genetic disease, with more feared undiagnosed.
It hits various ages depending on its type & results in progressive muscle weakness & loss of muscle mass.
No cure exists yet. pic.twitter.com/rGhNnkh2B7
— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) September 7, 2019
The Muscular Dystrophy Association of the Philippines estimates more than 200 Filipinos suffer from the genetic disease, with more feared undiagnosed.
— Anjo Bagaoisan (ᜀᜈ᜔ᜇᜒᜌᜓ ᜊᜄᜏᜒᜐᜈ᜔) (@anjo_bagaoisan) September 7, 2019
It hits various ages depending on its type & results in progressive muscle weakness & loss of muscle mass.
No cure exists yet. pic.twitter.com/rGhNnkh2B7
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.
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.
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"Marami sa amin hindi na nagagawang magpagamot," Sideco said.
"Marami sa amin hindi na nagagawang magpagamot," Sideco said.
"Meron nga namamatay na lang, hindi namin natulungan. Gusto namin gawin, pero ano'ng magagawa namin?"
"Meron nga namamatay na lang, hindi namin natulungan. Gusto namin gawin, pero ano'ng magagawa namin?"
(Many of us no longer get treatment. Some already died without any help from us. We wanted to, but how could we do it?)
(Many of us no longer get treatment. Some already died without any help from us. We wanted to, but how could we do it?)
This is why the group saw the need to build a "halfway house" for patients from the provinces.
This is why the group saw the need to build a "halfway house" for patients from the provinces.
MDAP estimates constructing one would cost P3 million to P5 million.
MDAP estimates constructing one would cost P3 million to P5 million.
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Aside from the fun run, which they hope to repeat next year, they have also been selling miniature houses made by members.
Aside from the fun run, which they hope to repeat next year, they have also been selling miniature houses made by members.
ATTENTION NEEDED
The sufferers may be few, but any spotlight on their plight would go a long way, said MDAP treasurer Catherine Patricio.
The sufferers may be few, but any spotlight on their plight would go a long way, said MDAP treasurer Catherine Patricio.
Ultimately, they hope it would result in government programs that would subsidize their costs for testing, therapy, and even supplements.
Ultimately, they hope it would result in government programs that would subsidize their costs for testing, therapy, and even supplements.
"Sana po, i-recognize din kami ng DOH na may ganitong sakit na existing sa ating bansa," Catherine said.
"Sana po, i-recognize din kami ng DOH na may ganitong sakit na existing sa ating bansa," Catherine said.
(We hope we would be recognized by the Department of Health that this disease exists in the country.)
(We hope we would be recognized by the Department of Health that this disease exists in the country.)
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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.
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.
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.
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.
"'Wag lang po sana pang-senior citizen, kasi paano naman po kami na hindi namin alam kung dadating kami sa edad ng senior citizen?" Patricio said.
"'Wag lang po sana pang-senior citizen, kasi paano naman po kami na hindi namin alam kung dadating kami sa edad ng senior citizen?" Patricio said.
(Do not just target senior citizens. How about us who do not know if we would even reach that age?)
(Do not just target senior citizens. How about us who do not know if we would even reach that age?)
Deco's own condition has enabled her to empathize with her physical therapy patients.
Deco's own condition has enabled her to empathize with her physical therapy patients.
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'I know their pain," she said.
'I know their pain," she said.
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.
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.
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