Thursday, March 21

Are we ready for a cure for spinal cord injury?

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SPINAL cord injury is devastating. The higher the level of injury along the spine, the more severe the impairment.

It not only paralyses limbs but takes away the sensation of touch, pain and temperature, and the ability to empty the bowel and bladder. In severe cases, it paralyses the diaphragm to the extent a machine is needed for assisted breathing.

The World Health Organisation notes that between 250,000 and 500,000 people around the world suffer spinal cord injury every year. It also states that there are no reliable estimates on the annual global prevalence of spinal cord injury but the estimated global incidence is 40 to 80 cases per million population.

Living with spinal cord injury is difficult due to the physiological changes and also because of the systemic barriers in society that hinder meaningful inclusion.

We have difficulties in getting an education, employment and leading an active social life because of environmental and attitudinal barriers.

Anyone with spinal cord injury, at one time or another, has dreamt of walking again, or even regaining some use of our hands.

I know I have. We have hoped to be up and running and living an independent life, either through divine intervention, sheer willpower, intensive therapies, or an outright cure.

At the moment, the effects of spinal cord injury are very much permanent. There is no treatment to reverse the paralysis.

I have been following closely the search for a cure since 1984 when I suffered a spinal cord injury that left me paralysed from my upper chest down.

Thirty-four years later, we are nowhere near a breakthrough. Most researches are still at experimental or animal testing stages. Some have gone on to limited human trials. None of these are available as mainstream treatments.

Scientists are using multiple approaches to develop this yet elusive Holy Grail. The studies include the use of nanotechnology to repair damaged nerves, stem cell therapy to regenerate the spinal cord, and implants to simulate the transmission of nerve impulses.

I foresee a cure for spinal cord injury, but not in my lifetime. I also foresee it is going to cost an arm and a leg, a price not many afflicted with this condition can afford when it becomes available.

Nevertheless, are we ready to be cured if it is available now or in the very near future? I know we will not bat an eyelid and go for it without a second thought if cost is not a factor. I know my friends in the same condition are rooting for a treatment that can make them walk again. Optimism is a good attitude.

But the answer is no. Most of us are not ready to be cured. Those of us who have been living with paralysis for decades may not be suitable. Many, if not most, of us have allowed our bodies to waste away.

Without therapy and exercises, be they active or passive, our muscles have atrophied, our bones are osteoporotic, and our limbs may have contractures.

Without proper management, we may also be affected by secondary diseases like pressure sores and renal disease. Pressure sores, if left untreated will eat into tissues, muscles, tendons, joints, and bones.

This can lead to gangrene that may require amputation to prevent the infection from spreading. Untreated neurogenic bladder and repeated bouts of urinary tract infections can damage kidneys. Renal failure is one of the major causes of death for people with spinal cord injury.

In view of those risks, our hopes must be tempered with action on our part. The preparation for the cure requires hard work in maintaining the body in tiptop condition by preventing those debilitating conditions that may put a spanner in the works.

In the best case scenario, scientists can regrow the spinal cord. But one cannot walk again immediately after that.  A lot more effort needs to be put in after the spinal cord is fixed.

Stamina, muscles, and bones need to be strengthened. It may take months or even years to regain full motor function through intensive physical therapies. We will have to learn to balance and exert control over our limbs all over again.

A cure for spinal cord injury will not miraculously make all the secondary diseases go away. As for me, even if a cure is found tomorrow, my body is too broken to be a suitable candidate for it. My osteoporosis and kidney disease make it doubly hard to treat. Even if I can walk, I will need a cure for kidney disease as well. Otherwise I will not be able to endure the demands of the vigorous exercises needed to rebuild my stamina and muscles.

That is why it is important for those who are still in relatively good health to maintain it as much as possible. Be active. Keep your limbs supple.

Go for all scheduled medical appointments. Follow the doctors’ advice. Make friends. Go on adventures. Live life while waiting.

Even though a cure may not benefit me, having lived with this condition for so long and experienced the difficulties, I earnestly pray for a cure to be found for those of us who survive long enough and those who sustain spinal cord injury in the future.

For those who are still holding on for a cure for spinal cord injury, my advice is to keep your body in the best shape possible. If anything, keeping healthy is the best gift we can give ourselves.