UNDER a pink blanket, “Mary” seemed like just another patient shivering from the breeze coming out of the air-conditioning unit in the corridors of the University of Santo Tomas Doctors' Clinic.

Wheelchair-bound and smiling, Mary had bright eyes that had no trace of the disease that was out to get her life. She has been having a hard time moving her limbs for the past two years.

Raymond Rosales, M.D., a specialist on nerve-muscle movement disorders, diagnosed Mary with amyotrophic lateral sclerosis (ALS).

Chances are, Rosales said, Mary may eventually succumb to total paralysis. With no cure for the disease, Rosales said about four percent of ALS patients undergoing treatment barely make it past a decade.

ALS, also known as Lou Gehrig's disease, is a progressive degenerative disease affecting nerve cells in the brain and the spinal cord. The disease slowly kills motor neurons in the lateral nervous system, the part of the body responsible for muscle movement. This may eventually lead patients to slowly lose the ability to control their muscles, to total paralysis, and even to death due to respiratory failure.

The disease can manifest in two “varieties,” limb-onset ALS, and bulbar-onset ALS. Limb-onset ALS is when motor neurons slowly die around the upper and/or lower limbs. This is characterized by the increased difficulty of moving the upper and/or lower limbs, or getting easily off-balanced.

Bulbar-onset ALS, on the other hand, affects facial muscles. This kind of ALS is characterized by difficulty in chewing and swallowing food, as well as speaking with other people.

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“They (patients) cannot eat because they have a hard time chewing and swallowing [in cases of bulbar-onset ALS],” he explained “The food that is meant for the stomach may also go the lungs. Patients could die of pneumonia or respiratory failure,” Rosales said.

No cure yet

According to the ALS Association, an estimated 350,000 are suffering from ALS worldwide.

Rosales said riluzole is the only medicine in the market designed for treating ALS. Other treatment methods are still undergoing tests.

Riluzole is an anti-glutamatergic, a medicine that is designed to dampen the growth of excessive amounts of calcium that was said to be able to destroy motor neurons. But riluzole is just a treatment, not a cure, Rosales said.

“It (riluzole) only delays the progression of the disease,” he said. “It could extend the lifespan of patients for about three months, but that's it.”

Local ALS research might have been possible should funds be available. However, Rosales said the extent of the research could go just as far as studying the disease in itself, with research on treatment costing too much.

“Even when the ALS Association gained millions of dollars through the Ice Bucket Challenge, they still haven't found a cure,” he said.

Stem cells

Research on ALS, however, garnered criticisms because of its apparent use of embryonic stem cells (ESCs), which are stem cells obtained from the inner mass cells of human embryos.

Socrates Villegas, the president of the Catholic Bishop's Conference of the Philippines, said in a statement that donors participating in the Ice Bucket Challenge should declare that none of their donations be used on research involving ESCs.

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“Catholics who participate in the challenge and who make donations to this research must also demand of fund-raisers and organizers an assurance that none of the donations made will be applied to researches that are ethically reproved,” he said.

The ALS Association explained that of more than 100 different research projects they are conducting worldwide, only one study using ESCs was being funded by them.

These stem cells, called “induced pluripotent stem cells” or IPS cells, begin as adult human skin cells but slowly become stem cells, which are ready to become other cells.

The Association added that this process offers a good opportunity to model the disease process and to discover and test new therapies.

“[T]he stem cell line was established many years ago under ethical guidelines set by the [United States's] National Institute of Neurological Disorders and Stroke,” the association said. “This research is funded by one specific donor, who is committed to this area of research.”

However, Rosales explained that the effectiveness of stem cell research in the treatment of ALS has yet to be proved by recent studies.

“I had about 10 or so patients [with ALS] before, and they went abroad to undergo stem cell treatment,” he said. “All of them did not make it. In short, it's still not proven [to be effective] yet,” Rosales said.

A light in the darkness

Mary might hold a piece to solve the ALS puzzle.

Rosales explained that unlike other ALS patients, Mary is a “special case.” She was diagnosed with ALS at 23 years old, far too young compared to other cases.

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According to the doctor, ALS commonly starts to affect people aged 60 and above. While he had ALS patients as young as 30, 23 years old was still something new to the picture. Rosales wanted to send Mary’s blood samples abroad for testing, but neither the Clinic nor her family had the funds to support the trip.

Her mother-in-law said that P50,000, which was the approximate cost of the flight, was no easy money.

This was why Rosales and his staff were planning to talk with the Philippine Charity Sweepstakes Office to request for financial assistance in bringing Mary’s blood samples to the United States for tests. For now, the doctor could only prescribe supplements to support her body.

“I really believe there's something [happening inside her body] other than ALS,” he said. “This is why we want to send her to the United States.”


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