The illness is called multiple sclerosis (MS), a disorder involving the spinal cord and brain. Remember the ALS and the ice-bucket challenge? Well, let’s just say that multiple sclerosis is a distant cousin of ALS in that they both involve the nervous system (although I will have to qualify there are a lot of major differences between the two).
The weird thing is that all her life, my mother has been living in the fun-and-warm Philippines. And most definitely, she’s not Caucasian. She is one of the very few Filipinos with this illness, although for some reason the number of those diagnosed is said to be slowly increasing.
How rare is MS among Filipinos? In the Multiple Sclerosis Lay Forum held at St Luke’s Hospital in Quezon City on 5 December 2015, for instance, less than 12 MS patients attended. According to the Asian Hospital website, an estimated 8,400 have MS in a country of around 100 million Filipinos.
One trivia: The disease is so rare in the country that three health caregivers I talked to thought multiple sclerosis was curvature of the spine. Sad.
People with MS may seem “normal” to some in that most do not necessarily look sickly. But don’t be fooled. There will be days where they can do their normal chores. At other times, though, they are simply too tired that they cannot even get out of bed.
This is not just body malaise. For one, this fatigue can go on for weeks before they recover. Because the myelin sheath—or the covering of the nerve fiber—for some reason gets destroyed, patients experience a whole gamut of symptoms ranging from tingling, lack of coordination, numbness to paralysis and loss of vision. One doctor described this to me as like the chafing of the insulation (the myelin sheath) of a power cable (the nerve fiber) that can lead to a short-circuit (one of the symptoms).