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

Anjo Bagaoisan, ABS-CBN News

Posted at Sep 08 2019 11:55 AM

Elizabeth Doco. Anjo Bagaoisan, ABS-CBN News

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.

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.

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.

"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.

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. 

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

Muscular dystrophy often leaves its patients in wheelchairs. Anjo Bagaoisan, ABS-CBN News

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.

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. 

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.

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.

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.

"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?" 

(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.

MDAP estimates constructing one would cost P3 million to P5 million.

Aside from the fun run, which they hope to repeat next year, they have also been selling miniature houses made by members.

These mini-houses for the halfway house fund sell for P200. Anjo Bagaoisan, ABS-CBN News

ATTENTION NEEDED

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.

"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.)

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.

Michele Sideco and Catherine Patricio of the Muscular Dystrophy Association of the Philippines. Anjo Bagaoisan, ABS-CBN News

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.

(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.

'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.